Louie and Ace

A Vacation Worth Remembering.

2009-07-29T15:33:00.009-05:00

Louie is back in school. Since he's on a balanced school year, he gets six weeks in the summer and three for fall, winter and spring. The greatest pleasure I found during summer break was the opportunity to just be a mom. During the break, we still had some therapy and worked with him on maintaining current skills and helping him progress as much as possible.

It was actually the week long trip to the cabin in the Smokey Mountains that was the real reprieve. This is where truly, I was simply a mom. Louie was simply a kid. A son. A brother. We ate and swam and took long boat rides across the most sparkling deep green lake water I have seen.

The kids fought incessantly and wouldn't take a nap. Louie had lots off pee-pee accidents. Plenty of dirt, sweat and sticky sunscreen clung to the boys like a second skin. Bed times were late and at times, grouchiness overtook. But no picture schedules; in fact, no real schedules at all.

We sat in rocking chairs on our deck overlooking the mountains and valleys of the Smokeys and watched 10 different fireworks displays firing their shouts of independence and sparkling, fizzling, fading lights.

We didn't have hot water for three days. The cabin couch was slick with what only your imagination could produce as possibilities. Our hot tub didn't work half of the time. The pool was scummy and there were dying dandelions in plastic pots around the pool. The fire pit, described as a great place for the kids to roast marshmallows, was a pile of ashes surrounded by falling rock and broken down benches. Busch beer cans and cigarette butts littered the ground beneath our deck.

I wouldn't recommend this "resort" to anyone. Ever. Ever. I would, however, recommend a trip with your family to a place with a porch swing and rocking chairs. A place where the intensity of the solitude and silence (except for the occasional redneck hollering woo hoo in the next door cabin) feels divinely deafening. A place where you can see the big dipper and when it rains, pillows of fog lie sleepily in the wet and warm valleys.

What a fine time we had. We didn't have to battle with Ace as much to wear his clothes, as it didn't really matter. The boys had their first smores...cooked in the oven, not the fire pit, but nevertheless, they were still smores. Ace sang a rockin' rendition of Twinkle Twinkle Little Star, complete with guitar strumming. Very cute. Louie learned the word 'boat' and proceeded to say it over and over and over...and I remembered my blessings. My rich and immensely blessed life.

So go. If you can. Go somewhere and remember what it feels like to be without TV and Internet. And what it's like to have long conversations with your husband. After nine years of marriage I am still surprised about how much I don't know about Chris. And that's what vacation is about, isn't it?

It's not really the crystal clear pool or the hot water (which, of course, would have been nice). It's about time. Elusive, fleeting, precious time. All we have is time. But so often it feels it's what we have the least.

Go. Somewhere. Put your arms around time. Hold the day, the hour, the minutes and seconds, close. Don't look at your watch. Then set out on a search for tadpoles. Skip rocks. Go barefoot. Dance. Sing with your kids. And seek out the constellations in a starry sky. Even if you don't know about astronomy, try anyway. The stars have a way of showing you their patterns.

The Cicada.

2009-05-13T21:03:00.012-05:00

Disclaimer:

This is a very sad, indulgent, dramatic, dark story. Read at your own risk.

If I'm going to have a blog, this story had to come. I had the "assignment" of writing it for my therapist. I'm doing some short-term therapy to deal with what he deems "traumatic grief". How personal. But if you're still reading my blog, you already know most everything. You've heard a lot of this before; some of the exact same lines, in fact.

I find it interesting that this time period, the period you're about to read about, has been the most difficult to process. Not the diagnosis. Just this 16 months of time when I watched my life from another place, another dimension, somewhere, maybe even from the sky. I underwent a metamorphosis. Not one of a caterpillar changing into a captivating butterfly. Instead, I was like a cicada leaving its shell behind. An exact replica; only empty inside.

And when the music comes to us
With its heavenly beauty
It brings us desolation
For when we hear it
We half remember
That lost native country
- Anne Porter

I am haunted by a photograph. It is a picture of me in the nursery eight months pregnant, arms cradling my belly, proudly smiling beside the crib we had put together that day. Seventeen months later, October 2^th, 2007, our son Lucas was diagnosed with Williams syndrome, a rare genetic disorder.

The pregnancy wasn’t typical; there were small problems throughout. Half way through the pregnancy he was diagnosed with intrauterine growth retardation (IUGR). But everyone kept saying it was all fine. He would be fine; some babies grow better on the outside. The last three weeks of the pregnancy I was going to the OB twice a week for “non-stress” tests to monitor the baby’s heartbeat during contractions; to see if the baby’s heart could “handle” contractions.

At 39 weeks, I was in for another stress test. My baby didn’t pass. My doctor’s nurse escorted me across the street to the hospital. The doctor had just told me we were having our baby that day. I called Chris at work, panicked. I called him again while he was rushing to the hospital. Crying because I had just been told I would be having an emergency c-section. I’d never even considered a c-section. The doctor (not mine) crudely asked “did you really think you would have a normal delivery with this baby?” Well, yes. Yes, I did. Chris barely made it in time to see Louie born. Full term, 4 lbs 14 oz.

In a haze of morphine, in a room of sterile equipment and blue paper sheets, the woman that had stood proudly in the nursery a month ago left. She went to a place where the broken go; a place where streets of coal were littered with trash, pills and bottles of red wine. The date of her departure: June 6, 2005 at 4:02 p.m.

Oddly, she could still see the scene play out below. As though she was sitting above it all, watching a horror movie without an ending; a movie that kept looping, playing over and over. From above, she watched, as her tears fell down and mixed with the rain falling on Vanderbilt Hospital as her son was rushed to the NICU.

I wish I could go back to that moment after his birth and gather her in my arms; that ghost of myself, for I knew she would never return the same. I would have held her tightly. I would whisper warnings in her ear that her heart would soon be shattered into a billion pieces. I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive. But in the meantime, to brace herself and brace herself hard. And to beware of the temptations of covering the pain with the vices that sat beside her on a dark cold road of coal.

The desperate mother took her son from doctor to doctor, from test to test, from needle to needle. They drew blood from a vein in his head since his arm veins were too small. The blood seeped into his white-blonde hair and dripped down his face.

From pediatrician to pediatrician, there were no answers. The endocrinologist gave us hope that maybe it was simply his hypothyroidism and that he would “catch-up”; that maybe he needed growth hormones. Another hospital bed. Another needle. Another test. She cried at every visit. She knew the staff thought she was insane. But she knew also there was more than a thyroid problem or growth hormone deficiency.

Louie wasn’t growing. Everyone celebrated when he gained two ounces. People bombarded her in places like Target asking why he was so small. Or guessing his age, “oh, is he 2 months?" “No,” she would reply. “He’s 7 months.”

She breastfeed, she bottle-fed, she used contraptions taped to her breasts to supplement with extra milk while nursing. The pediatrician recommended cereal earlier than a typical child would eat it.

Finally she found the right pediatrician. He suggested it was time to see a developmental pediatrician to look at possible genetic disorders. Genetic disorders. She had never considered a genetic disorder (looking back, I'm not sure why...it seems so obvious) and so she spent the night researching every genetic syndrome. That is when she found Williams syndrome and she knew. And her husband knew.

She called the nurse the next day, sobbing that he had Williams syndrome. She was dismissed. The lunatic mom strikes again?

The family visited the developmental pediatrician, who told them, just as everyone else had, he’s fine. He’ll catch up. The family asked if he would test for Williams syndrome. He agreed.

Three weeks later the pediatrician called and told the mother that she was a good researcher and that indeed, he had Williams syndrome. It was 5:00 p.m. and she was feeding Louie in his high chair. A phone call that will forever be burned into her being. She hung up the phone and called her neighbor in hysterics; she couldn't be alone and needed someone until Chris could get there.

He came quickly. And that’s when she returned from above, came back to the earth, hyperventilated and collapsed on the laundry room floor. Later that night she crawled into Louie's crib with him. She was back. She had an answer. And that answer was Williams syndrome. And the child, the boy she imagined she would have, the one every parent thinks they will have, was gone.

She came back to the ground, the earth, the soil beneath her feet once again. Louie didn’t go to the road of coal. But the imagined Louie died; the Louie without a genetic disorder died. And left Williams syndrome behind. Now there was an answer, an explanation, a truth. A truth that would empower the family to move on and to live together once again.

To Louie and Ace: Secrets and Mysteries

2009-03-20T20:50:00.036-05:00

"A wonderful fact to reflect on, that every human creature is constituted to be that profound secret and mystery to every other." - Charles Dickens

Dear Louie and Ace,

I write this letter to you today as a testament to how I feel about you. The challenges and beauty; the triumphs and failures. Our life. As it is. Today, April 15, 2009.

Recently, I painted a door black. Plain, flat and pure black. To my surprise, the color black is full of secrets and mysteries. Black isn't black. It's not like white; white stays white. But black, in paint form, moves and morphs into brilliant colors: green, turquoise, blue, yellow, red. When applying it, it appears blue and then green and then suddenly it becomes the darkest of all colors, the color that can have a bad reputation. The bad guys always wears black. How very secretive and mysterious black is. How very intriguing black is at it holds, quietly and silently, the things of which it is made.

Louie and Ace, I am proud to be your mother. But I know you are not mine. I've heard it said, children do not belong to you, they are only passing through. How thankful I am that you're here with me, if only passing through. I realize that slowly you will stop wanting "up, up, up" into my arms. You already walk a step ahead. I will no longer be your favorite person to be with. And you will become mysterious men with secrets and thoughts I will never know.

Oh Ace, you and your pairs of 22 autosomes. Your total of 46 chromosomes laced with the appropriate genes hanging like luminous Christmas lights stringing your internal make-up. But still, I find you are equally as mysterious as your brother with chromosomal structural differences.

Ace, I don't understand why you change suddenly from a quiet artist, working quietly, introspective with markers and paper to a berserk marker-armed maniac out for attack...angrily biting off the marker heads and spitting them brazenly onto the floor. Oh yeah and by the way, just wondering why you put my bras around your neck.

You received all chromosomes promised to most. You are my second first child. This typical development is new to me. Ordinary to many; astonishing to me. The details you see and mimic. The way you learn from your environment. The way your fingers operate and manipulate objects. Your attention to detail. Your memory. I am awed at human development in all it's perfection and natural progression.

Louie, your attachment, well, that's putting it mildly, your lie-on-the-floor-and- scream-and-cry-episodes as I try to prepare your dinner until finally you are given the coveted Annie's Homegrown brand Mac-n-Cheese box. And now you've decided that's not enough. You also want the powder cheese package that comes in the box as well. It's because of the bunnies. There are lots of matching bunnies on the packaging of any of Annie's foods. And there are a million bunnies on the cheese packet. Which means the same goes for the Annie's bunny cracker boxes too. Anything that matches...it's your new love, replacing street signs of olden days. Matching bunnies. How peculiar and cute.

Louie, you are so interesting to me. Your fascinations, your love of music and bunnies on cardboard food boxes. Your love for cuddling and kissing. Your passion for kites and balloons. Your uncanny ability to match objects and words. The way you sneak away to tear books (much to my dismay); after all, books are your most beloved of all items. I know you only do it because it's too much to resist. That paper, the way it feels, sounds and looks when it tears. A visual stem of paramount proportions.

I know I've written about this before but I am constantly impressed and amazed at this science experiment happening in my own home, before my eyes each day. The sharp and piercing contrast between the two of you all because Louie is missing a few genes having to do with elastin.

And because of you both, I am a Mom Scientist in my own right. A mom who sees genetics at play everyday. I am also a Mom Child Development Specialist. I know more about child development than I ever thought possible.

As Parental Pseudo Scientist and Child Development Specialist, I always want to ask the question: Are you two really more alike than you are different? Yes, you both have arms and legs and heads. But it's difficult for me to see similarities beyond your physical features. Once someone asked me if you had the same father. Seriously? (BTW, yes, you do). But even I can't recognize your homogeneity.

Louie, it's not fair you got shorted a couple of genes on chromosome 7. Lucky number 7; not so lucky.

And Ace, it's not fair that you will experience the inevitable embarrassment and questions that will come as you get older. The world simply isn't fair. But as they say, who ever said life would be fair?

My hope for our family is that we reflect on this life thing, and realize that for the most part it's pretty good. Good things happen. This mysterious life, this secretive world, lovely, beyond words; as lovely as anything you could ever imagine. Sometimes our lives do feel black. But if we can remember what lies beneath that darkness, maybe we can lift ourselves up and back out into the world.

How I marvel at you boys as you grow. How you both mystify and madden me. I pray your secrets and mysteries will hold you and shine upon the world, beaming your gifts and magnetism to anyone and everyone who crosses your path. The fortunate people crossing your path.

P.S. Not sure why that one paragraph is bigger than all the others. I made the mistake of messing with the HTML.

The Potty Post.

2009-02-24T14:08:00.015-06:00

Potty weekend started like this. The first picture. Neat, clean, simple. The second is the end of the weekend. Disgusting. Dirty. Living our lives out of the bathroom.

Anyone who has a toddler and writes a blog will write this post. The potty post. It's because this whole insane process is astonishing. I've heard lots of potty training talk but haven't really tuned in or been able to relate when a friend tells me, with great (and deserved) pride and joy that he "peed on the potty this morning!". "Oh yay!" I say back. How exciting!" I feign enthusiasm.

So now we're asking Louie to trade his diapers for BIG BOY UNDERWEAR. I've heard many methods for how it has been done: I trained her at 6 months. Just let 'em run around naked outside. Let 'em run around anywhere naked. I did it in three days. I did it in one day. It took me a year and a half. Potty training is one of those things that I feel like everyone knows how to do except me

I recently found the frayed end of my diaper-changing rope. Suddenly, I was completely disgusted by the whole bit of it. Done! Enough with the poop! I ignorantly thought the potty training would help alleviate my exasperation. Little did I know how much more intimate I was going to get with pee and poop. All those "accidents"; such a sweet way to describe poo-poo in underwear. Try taking those off while keeping the "accident" contained. Difficult if not impossible.

Never could I imagine the excitement and thrill of a successful potty trip. "Hip Hip Hooray!" I say! Really, I shout "Hip Hip Hooray, Louie! You peed on the potty!" as I jump all around, pumping my arms in the air, doing the potty dance, singing the potty song (Yay Louie, Yay Louie, Yay Louie, YAY!). All I can say is it works, all of this Team Potty cheer leading. Today, including myself, there were four women cheering and applauding his toileting skills. He kept signing for "more"..."more" applause. "More" cheering. A potty party!

Isn't it cute, the word potty? They get to call it a potty. So when does it become a toilet? When do you graduate from "honey, go use the potty" to "DO YOU NEED TO PEE"? The word "potty" has passed from my lips no less than a thousand times over the past week. The first weekend was brutal with the number of hours our family of four logged in the downstairs half bath. There were always at least three of us in there at once. Certainly you know Ace is right there with us, without fail, every time. And I mean right there. What child wouldn't be there, what with all the bubble blowing, book reading, Old MacDonald singing, clapping and "yaying"? Are you kidding me? What could possibly be more fun?

We've had good days and bad days. Wet days, dry days, dirty days, held "it" all morning days (almost called the doctor after he held it for 4 hours!), he will never get it days and hopeful days. But now, it's obvious, there is hope. He does get it. He absolutely understands!

It was Louie's teacher's idea to start potty training. The average age for a child with William's syndrome to become successfully potty trained is age four. Louie will be four in June. Louie is lower functioning than most with WS. I therefore deduced that Louie wouldn't be ready until five. I even prepared myself for much, much later. But mostly, I didn't think about it. My expectations were low. And don't people usually live up to their expectations?

I have been protecting myself by not thinking about the future and by not believing in Louie and his capabilities. My immediate thought about potty training was there is no way he's ready but sure, we can try and fail. Then we'll try again later. I wasn't invested. Even after we started I was apprehensive.

And now, after seeing real success, I'm starting to believe. I'm not beating myself up too much about this but I feel compelled to examine how my protective reflexes have failed me. By keeping my expectations lowered, I will feel less disappointment, I will avoid the despair of failure? No. But I will in the process hold Louie back.

I realize I may be facing a serious loss of faith and the ability to believe in the intangible. Suddenly, science has taken over, my thoughts safely contained within questions such as is there any research to support that? Do we have any medical evidence to suggest need for growth hormones? Do you have the updated medical guidelines? Somewhere along the road, faith eroded itself from my body, leaving a carved out space where apathy and doubt now live.

The good thing about this realization is that it's not too late to invite faith back to live with me, to fill the spaces and holes, to take over the dark and to shed light, to start believing again. I want that. I want to believe in life again. I want to believe in miracles. But mostly, I want to believe that Louie's potential is far and wide; his life valued and boundless, mysterious and wild. And that he will wear boxer briefs. Not diapers.

Magical Thinking.

2009-01-28T13:06:00.010-06:00

I'm reading Joan Didion's "The Year of Magical Thinking." It's about her husband's unexpected death during the same period of time her daughter was in ICU with septic shock. I'm sure you're wondering why I'm reading something so depressing. And that's just the thing, as Didion points out, we hide our grief because it's ugly. It's too depressing. We're uncomfortable with it. So, those who are experiencing pain, loss and grief, well, they too know the rules and quietly slip away behind a locked bedroom door.

We shy away from those who are grieving. We don't know what to say or do. So, we say things like:

- Oh, you'll have another baby

- He'll be fine...he'll catch up

- The implants look real

- This was given to you because God knew you could handle it

- You will learn patience from this

- It was her time to go

- He's in a better place

- An important lesson will come of this

- There must have been something wrong with the baby, so it's a good thing

- Time will heal

Some of these words are true, some of them are horrible but usually it's not the words grieving people need. There are no perfect words. You will never find the right words because they do not exist.

I believe it's more about the being there. And giving that person the freedom to grieve, to tell their story, to cry, to talk about it or to not talk about it. Maybe help them realize that pain does not equal weakness.

Didion describes grief in the following passage:

"Grief is different. Grief has no distance. Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life. Virtually everyone who has experienced grief mentions this phenomenon of "waves"."

Oh, yes, the waves; the waves crashing down with all their weight. And the gentle salty waves that constantly wash up against the still raw nerve that runs through you. Sometimes I truly feel like everything is completely fine. And that is happening more and more - a good thing. I think to myself, oh this is easy, no big deal at all. Special needs, Williams syndrome, whatever. I have this under control. And then, there it is...like an electrical shock that comes on quickly and shakes my bones and zaps any notion of control I thought I had.

That's the scary part about grief; that you never really know when one of those "waves" might break on you. I'm fortunate to have a friend who also has a child with special needs. She feels like home. We say things we would never say to anyone else. We stand in the park crying because we started talking about our diagnosis stories. That's rare...that we cry, by the way (see...great example of shame for feeling sad, for crying, for grieving!). Our eyes get watery on occasion, usually when talking about the future, that scary place for parents with kids like ours; but more often than not, we are watching our kids play and talking about recipes or something simple and ordinary. But on occasions when things are anything but ordinary, it's nice to have a friend who really understands all the intrinsic challenges of parenting a child like Louie. She provides an anchor when I need it most.

The day we received Louie's diagnosis was the day I began my own journey of grief. And a journey it is. I vividly remember the date (October 2, 2006), time (5:05), what I was doing (feeding Louie dinner), who I called (my friend who lived up the street; I needed someone there until Chris could get home). Chris was able to get home quickly. I remember how I hyperventilated and breathed into a paper bag and collapsed on the laundry room floor. I don't remember anything after that. Things just went dark.

I also grieve for the person I was before that day, the person who endured 16 months of wondering what was wrong with my child. After having Louie, I was strangely fascinated with pregnant women and I wanted to talk about my own pregnancy and labor over and over. I don't know why; maybe I thought the more I told my story, maybe I could change the ending somehow. If I could just go back, I could eat more and maybe then he would have grown bigger in the womb, or not needed an emergency c-section, and not weighed 4lbs 14 oz at full-term. Maybe I could go back and fix things; magically give Louie the genes he needed, the 7q11.23 region of chromosome #7.

I haven't finished the book yet. But just its title, "The Year of Magical Thinking", evokes such emotion and imagination. Magical thinking. I wonder how Didion came up with her title and what exactly it means to her.

For me, experiencing grief has opened the door for magical thinking. Grief has changed me; molded me into someone I wouldn't have recognized five years ago. It has made me face my fears and run from them at the same time. My spirit has been broken; my life unhinged. But again and again, it is rebuilt, restored and oftentimes, magical.

You know that bag I said I hyperventilated into? That's a picture of it above. I later wrote the word "Breathe" on it and dated it with the day we received the diagnosis. I plan to destroy it someday. I'm not ready yet. I still need it for something; just not sure what. Proof that October 2, 2006 really happened? Something tangible, something that I can touch, something less ambiguous and painful than those clinical cold words like syndrome, retarded and health issues.

I don't know. Maybe I keep it around simply as a reminder to breathe. To breathe and hold on to the magical moments.

Happy New Year?

2009-01-08T20:57:00.006-06:00

January is a rough one. Even for someone who likes winter, it's hard. The big build up to Christmas and all the frenzy surrounding it inevitably leads to a crash. In a blink of an eye, it's over and we're left with a mess to clean up. January sets in and it's overcast, highs only in the 40's every day on the 10-day weather forecast. For us Southerners, that's cold, people.

Then you've got this big new year to live up to. Even if you made not a resolution one, I know that there is still a part of you that approaches the new year as a new beginning; the year you'll organize the attic, the year you'll be nice, the kind of nice that people comment when you leave the room "she's soooooo nice", and of course, this is the year you will conquer world hunger and cure AIDS. Seriously. That's what we do to ourselves. All in the name of reinvention. How we (I?) love reinvention.

Whether you actually write down resolutions or scoff at those who do or have signed up to live Oprah's Best Life, it's virtually impossible to resist the past all folded up into a neat little package, a year, last year, and a fresh year lies ahead, clean and fresh, a new dawn, beckoning to you to come, start anew. So we go and make these huge, nonspecific "resolutions", grand ideas to become the person we were meant to be. Why? Why do we antagonize ourselves so?

Five failed resolutions later, gray skies and stale Christmas decorations littered about, here we are in the bleak days of mid-January. Oh, and by the way, if you are one of them, with the lights still up and ON, the droopy bow on your crooked wreath, your blow-up Rudolph that is no longer blown up, lying sadly on your front lawn, for sanity's sake, I beg you, take them down. Just pack them up. Put them away. Be done with it! There's nothing that contributes more to January doldrums than these holiday leftovers.

I had planned to blog about some Louie and Ace adventures but maybe next time. They've been endlessly entertaining. But I'm spent. All the depressing thoughts about January has gotten me down. Until next time...hope this didn't bum you out! Happy New Year everyone! May this be your best year yet.

April is the Cruelest Month.

2008-12-19T15:58:00.013-06:00

I love winter. Truly, I love it. T.S. Eliot explains it much better than I ever could in The Waste Land:

April is the cruelest month, breeding

Lilacs out of the dead land, mixing

Memory and desire, stirring

Dull roots with spring rain.

Winter kept us warm, covering

Earth in forgetful snow, feeding

A little life with dried tubers.

If only I felt the same way about the holidays. You may or may not know...I have issues with to-do's. And with the holidays come automatic to-do lists. It's inevitable.

The gift-buying is the most stressful. I'm working on letting go of the pressure to buy the perfect gift. It really is the thought that counts. I'm also trying to be okay with not having everything done RIGHT NOW.

Unfortunately, the battle continues with the voice that repeatedly tells me "you really should be doing ______." I want to enjoy this time with my family. Louie is on Winter break and we can switch off the alarm clock.

The tree is lovely and makes things feel peaceful, especially at night. Christmas lights make everything look better. I may be about to go into an old-school Christmas light phase where I keep them up year-round, tacked to the walls like we did in college.

My boys don't understand Christmas yet. They'll enjoy opening gifts and they have certainly enjoyed the tree, at the expense of glass ornaments and my patience. This tree has been rocked. Really, rocked. But it's still standing. And I'm still yelling out "Hands off the tree!" twenty or so times a day.

We went to Louie's Christmas party at school yesterday. All of the kids in his class have autism and four are on the diet - gluten-free casein-free - so it made sense just to serve GFCF foods at the party. Surprisingly, it wasn't that bad. The sugar cookies tasted like sugar cookies and there was a delicious and strange Chex-type mix made with agave syrup (or something like that). We were promised ham but it was forgotten (that's okay Janese!). We also had grapes, Veggie chips, Tings (Cheetos without the cheese), plain - no butter, oil or salt - popcorn and juice boxes. Nothing says Christmas like GFCF cookies and ham. We laughed about the random assortment of "party" food. We're pretty sure none of the other classrooms offered such a variety.

If you ever happen to stumble upon a classroom of kids with autism having a Christmas party, you may not notice anything different. Upon first glance it looks like any other party. But under the surface, if you're paying attention, you can begin to feel the forceful current that is called autism.

An eerie silence lies beneath the buzz of parents and teachers greeting one another and setting out paper plates. It's more what you won't hear that defines the difference. You won't hear a child telling a parent to "look here, watch me." But you may overhear a parent complimenting their child for good eye contact. There won't be any loud arguing over toys but you won't hear the busy chatter and laughter of children at play either.

I overheard one of the children say his own name when looking at the picture of himself inside the frame he had glittered. "Great job! Good talking!" his dad exclaims. Another parent praises Louie for responding to his name with eye contact.

It's these most natural behaviors that children with autism and many other development delaying syndromes often lack. I find it difficult to get my head around the idea that I have to teach Louie how to learn, how to play, how to speak, how to express love. And now that I have Ace for contrast, I am seeing exactly how natural these things are in typically developing children.

There are times when autism is all in your face and it's loud and can't be ignored. But for the most part, it's terribly silent. I still find it difficult to see it in the other kids in his class. In passing, it can be missed. This must be why so many aren't diagnosed until later, often not until they start school.

Autism is fascinating. The strengths and the extreme deficits. Then add in Williams syndrome and you've got a syndrome commonly associated with over-friendliness fighting with autism's typically unsocial behavior. These battles and others play out in Louie every day.

Being around those parents at the party felt comfortable, almost soothing. We share a similar story and experience many of the same challenges. As parents of preschoolers, we're all fairly new to the diagnosis. Beyond the silence you can see autism if you're looking for it; the same goes for the parents in that you have to look beyond our thin veil of composure to see the throbbing vein of grief that runs below the surface.

My neighbor asked me about grief today and then quickly apologized as though she'd said the wrong thing. I told her that she was right - it certainly is a grieving process.

Grief is sneaky. I've been enjoying many days in a row where I feel like "hey, this is no big deal at all. I have everything totally under control..." And then, Grief arrives, an unwanted house guest with tears and lumps-in-throat for everyone. I am happy to say though, that with each passing day, Grief visits less often.

There was no Santa at Louie's party. No singing or art projects. Just a bunch of self-proclaimed misfits...the teachers and parents, the kids. All of us. I can't speak for them, but I have never felt more like I fit in than I did then, at the Christmas party for preschoolers with the label of autism.

Preparing.

2008-12-09T22:45:00.013-06:00

My friend emailed me regarding my last post about my frustration with electrical plug outlet covers. She let me know that her friend put a pair of scissors in the electric outlet and dislocated her shoulder when she was four. Yikes! Thank you, my friend. I needed a real life story to scare me into keeping those things on.

I'm definitely not looking for any extracurricular injuries or electrocutions. My hands are busy applying triple antibiotic ointment and calling the pediatrician after-hours clinic. Yesterday, Ace fell head first down the kitchen steps leading to the garage. Then he dropped a log on his toe. I told him to stop pounding that log on the floor like a jackhammer.

This goes on all day. Average number of "oh, Ace, you bumped your head!" - I'm gonna say five? Sometimes ten, sometimes four. Never less than four. And always with tears and toothy, hold-me-mama cries.

Ace pushes the limits every day. He stands atop of a flight of stairs, one leg dangling in front of him, dare flashing in his eyes. That look of mischief, that look that I keep trying to ignore. That look doesn't go with my please God, give me a geek plan.

It's been there since day one. Others notice it too. I'm trying hard not to say anything about it, to draw too much attention because I feel like people grow into the words by which they are defined. If someone tells you how funny you are, more than likely you're going to think you're funny. If your parents tell you that you are wild, wouldn't you tend to be more wild?

I don't even like to talk to Chris about the look too much. But sometimes I can't help it; I want to try and figure out how we, we of all people, got this kid. A daredevil, mischievous, I-cannot-walk-because-running-is-my-only-option, gregarious child.

I know I have to let go of my dreams of him being a geek. Of us sharing the same novels and of him as a teenager staying home every weekend night. To study. And play computer games. He might indulge in Coca-Colas and Reece's peanut-butter cups since he would be staying up late - 10:30 or so. I need to stop.

Really, it's okay. Don't get me wrong, if that does happen, I will be giddy with mommy-giddiness. But I'll prepare for the story his eyes tell. I have a suspicion his story is going to be more fun anyway, wouldn't you say?

Louie is nothing like this. He's overly cautious and careful. Which is why it hurts in more than a physical way when Louie falls. He fell off a bench the other day, landing flat on his back and head. His protective reflexes are not very good and in many cases, nonexistent. Louie's head smacked the wood floor with a flat sound. Like a rock was dropped to the floor. He just lay there, a bewildered look in his eyes. He doesn't understand. No child does but to Louie, it's a breech in trust with his relationship to the world.

Louie has never bled except at the doctor's office for blood draws. His accidents are few and far between. Maybe he understands his limitations or maybe he's just scared, but either way, he doesn't take physical risks.

My life is a constant opposite, a stark contrast of light and dark, on and off, Louie and Ace. I will try my best to keep the plastic covers on the outlets, to keep the gates on the stairs closed. I pledge to not leave them alone in the tub. I will work hard to channel Ace's boundless wonder and curiosity. And push Louie to develop his. I'll tell Ace not to mimic everything he sees and jump up and down when Louie claps his hands when I clap mine.

On occasion, they come together in harmony, two notes, high and low. It's not often, but occasionally they do find calmness in being together, beside one another, maybe just to hear about what Elmo is thinking about today or about a comb and a brush and bowl full of mush for the 992nd time.

Ace is growing, developing, learning and surpassing Louie daily. It's happening right now, right this minute, today. They are wearing the same size clothing (lately, with their similar size, people always think I have twins, especially when I have them in the double stroller. It's funny how people clear the way and say "oh you have your hands full!" even though they also have two kids.). For today, they enjoy many of the same books and activities. But in terms of development, Ace is far beyond in expressive and receptive language skills. In many ways, a lot of the surpassing is behind us. I knew it would happen. I know it's happening. I am prepared.

Instead of feeling upset about missing these milestones with Louie, we like to tell ourselves that Ace is just exceptional and amazing in his human development skills. We really believe this so please, I beg you, don't burst this bubble.

Ace sometimes mimics Louie's unusual behaviors like covering his ears and yelling "eeeee". However, he quickly gives up and often stares at Louie like "I don't understand you, I sure can't figure you out but you are pretty much the coolest person I have even laid eyes on. Ever. Ever."

He still follows Louie everywhere. He likes to wear Louie's wrist sweatbands that he uses to wipe his drool (thanks Amy!). He pretends to wipe his drool even though he doesn't have any. Ace brings me Louie's braces to put on his own feet. I tell him to be thankful his arches are perfectly fine and that he doesn't have to wear braces but end up putting them on him for a minute anyway. Because whatever Louie does, wears, "says", is what Ace wants to do, wear and say. And so it goes with siblings.

There is something to be said for preparation. From the moment I knew I was pregnant with Ace, I knew Louie would be developmentally left behind by the unborn baby. I have been ready, armed with emotional ammunition. Bring it on developmental milestones. Bring it on.

I still have a lot of work ahead of me. As all parents, we worry about the futures of our children. There is only so much we can do to prepare. And some things, I don't believe you can prepare for at all.

There will be a day when Ace realizes that Louie is different. That he stands out from the others. Won't that moment come? How could it not? As a parent, how can I change the norm, alter the perspective so that different is beautiful and standing out is the only way to stand? I suppose that is my assignment. My preparation.

Childproofing.

2008-12-03T22:03:00.008-06:00

I hate, and I hate to use the word hate, those electrical plug outlet covers. I hate them. We have the cheap kind that take some type of kitchen utensil or a power tool to pry off. I always try, and never succeed, to use the plug for whatever electrical device I am trying to use, key word try, to pry off the cover. In the process I usually bend up my plug pretty good and have yet to get a cover off using this method. But every time, I think "I'll just try it real quick, maybe it will work" as I stick (and bend) one of the plug prongs between the cover and outlet. For some reason these safety covers are starting to sound more like hazards to impatient parents such as myself.

So,then I proceed to curse it and stomp off to find the appropriate device necessary so I can get to my electricity to finally do the vacuuming that has been procrastinated to the point of the kids snacking off the floor, "Yum, a dried pea, oh looky here, 3 raisins and a half an animal cracker."

I've seen those pricier outlet covers and now that I've built up so much rage against these plastic pieces of frustration, I feel the investment would be worth it. However, this brings up another point. And please, if you or anyone you know have children who have been injured in an electrical plug incident, I mean no disrespect. It's just that I personally don't know anyone nor have ever heard a story about one of these types of injuries. Not a friend of a friend or a cousin of your best friend's sister-in-law's sister. But let's keep in mind I've only been a mom for three and a half years and paying attention to plugs and plug related injuries. Well, obviously not paying enough attention. Are we worried about them getting shocked? And how bad is the shock should it happen? Is it life threatening? Should I have consulted Google before asking these questions openly - out loud and in writing? It may not surprise you that my husband is the one who took all the plug protection measures around here.

Enough about electrical outlet covers already!

Ace has started singing. His favorite song is Baa Baa Black Sheep because he can sing the Ba Ba part. But then yesterday, I hear "uh oh oh, uh oh oh". Perfect melody. There was no denying he was singing Beyonce's Single Ladies. If you liked it then you should have put a ring on it. Oh well. Beyonce is not typically my kind of music but since she's been everywhere promoting her new album, I've decided she's okay. Uh oh oh, uh oh oh.

Louie is doing fantastic. Really coming out of his shell. He is with us. Really with us and it's a joy. He is a joy. He's a 24-pound skinny thing but gives hugs with the strength of a boxer; a hug that carries all the words he can't say, all the love in the only way he is capable of giving it. Isn't it interesting that many of us neurotypical people, with excellent verbal skills, fumble around for the right words but still can't come close to carrying the weight of Louie's hug? For me, his hug says it all. And quite simply, I've never felt so loved as when he wraps his string bean arms tight around my neck and buries his drooley, wet face in my hair.

What a roller coaster post. I started off hating the world and all the electrical plug safety covers existing within it to the power of hugs. Blah and peace, signing off...

- J

Halloween: A Velvet Pirate and The Dark Side.

2008-11-23T23:11:00.008-06:00

Hi,

It's me, Louie. I thought you should know that my parents dressed me up as Darth Vader for Halloween. I overheard their conversation and it went something like this:

Dad: Louie is NOT going to be Darth Vader for Halloween! That's terrible!

Mom: Oh, I didn't really think about it. I just grabbed the two costumes left in their sizes and they just so happened to be Darth and a pirate. I forgot Darth Vader was so bad.

Dad: Yeah, he's bad. He's the dark side. Louie is NOT going to be the dark side.

Mom: Someone has to be the bad guy. But go ahead and try to find another costume. These were all they had in their sizes and they were half price.

And so it was, we wore our costumes as only toddlers dressed in an all black hooded cloak and velvet knickers could. With embarrassment and resentment. Just wait until me and Ace know how to talk. Those parents of ours...they are totally in for it. I can't wait to tell them the way it's gonna be. And it ain't gonna be the dark side and lacy pirate costumes.

My mom has admitted she's not good at these holiday and birthday things. And I guess she wasn't kidding. I should probably be thankful she even took us to a Halloween party. After all, she's yet to throw me an actual birthday party. You know the kind with other kids and lots of presents? Because I don't! Never had one. Probably never will. What's up with that?

Better sign off. I think I hear footsteps!

Love,

Louie

Milestones and Growth Charts.

2008-11-13T15:56:00.013-06:00

Both children are asleep so I have this moment of uninterrupted, guilt-free time on my hands. I sit here among the above pictured clutter and wish I could make up my mind on whether I will be a motivated, list-checker or slacker blogger. Slacker blogger it is!

I make these really elaborate lists all over the place, in the notes area on my phone, on the back of receipts, scraps of paper torn from Louie's school notices. Then, I stress all out because my notes are not organized. I go and find all the lists and write them out on a piece of paper. I don't look at them again for two weeks. I accomplish nothing from the list. Stupid list. It's a bit of a problem. Or mental instability.

What I realize and fundamentally understand, but can't seem to come to terms with, is that everything will never all be done. Meaning, I will never sit on the couch, feet propped up on the fraying brown ottoman, hands behind my head and have that feeling. The feeling of it's all done. The house is clean, the groceries are put away, the laundry is done, the bills are paid, the children are fulfilled, dreaming of Pooh Bear and carrots with Ranch.

That was fun, writing and imagining that scenario. It's okay, though. That's life. It keeps going and going and if it doesn't...well, then, it's not really a life, is it?

A friend emailed me today and made mention of her fifteen-month-old not walking yet. Not that she's terribly worried but just starting to think about it a bit. She said she couldn't imagine how I must have felt waiting all that time for Louie to walk. I started thinking about it, concluding that it wasn't that hard. Crawling, on the other hand, was desperately difficult. He didn't crawl until 15 months and we didn't have a diagnosis.

We were always worrying about his missed developmental milestones, hypothyroidism, low muscle tone and his size. He wasn't and has never been on the growth charts.

Everyone, especially people in Target for some bizarre reason, felt it was their right and duty to comment upon Louie's size.

"How old is he? Three months?"

"Um, no, he's 9 months," I tell them.

"Oh, wow, he's small. My son weighed 82 pounds when he was that age. What are you feeding him? He's crying! I think he might be hungry. Didn't you bring a bottle for him?"

Ahhh. Memories. No, really, that was a tough time because we were stumbling along as first time parents, clinging to a hope that none of Louie's issues were connected and that everyone else was right...he would be fine. Over and over we heard it, "oh, he'll catch up", "he'll be fine, don't worry."

And so we tried not to. And made excuses, blaming his TSH levels and shoddy growth hormones. That was the story we chose to tell to ourselves. And anyone else who asked. I finally, after months and months of comments and months and months of worry, I took it out (just a little) on a Target checker. Beep...beep...she scanned my 12 items or less.

"He sure is small," she commented innocently.

"Well, you know what, he's got a thyroid problem and may need growth hormones and he's delayed and we're just not sure what's going on!!" I told her loudly as I swiped my card.

"Would you like to open a Target account and get 10% off today..."she trails off.

As more time passed and more milestones were missed, the more desperate we became for answers. Every doctors appointment was about weight. We knew his weight to the exact ounce and any gain was significant and cause for celebration. How we studied the growth chart, praying fervently that he may one day appear on it. But every time, less than one percentile. Less than one percentile. Less than one percentile. It became our unchosen mantra.

We shoved food in his mouth and forced him to drink more than he desired. I nursed him with tubes filled with supplemental formula taped here and there. It was a sight to behold, for sure. We forced bottles with whole milk plus formula or plus Carnation Instant Breakfast or plus dry milk. We became upset when he wouldn't finish it and burped him and coaxed him, using our best parenting gimmicks to get him to drink just one more ounce. One. More. Ounce. It was such a big deal.

I could go on and on about that time - those first 16 months of Louie's life. All of this to say to my friend, that no, walking wasn't hard but crawling was. And now talking is. But in a different way because now we know and with that comes more patience and perhaps, at times, apathy, I shamefully admit.

Most of the time there is no need for worry and everything truly will be fine. My friend's daughter will be fine. She's just taking a little more time to enjoy the landscape, the nuances of the fading grass and fallen autumn leaves that whisk around and delight her.

But the pressures of the world, the constant pressure to hit the next milestone, to be the right size, to say the right words, to measure up, well, I suppose they'll always be there. But we'll always have the choice as to whether or not we will listen. As for me, tonight, I will not listen. My ears will only hear laughter and guitar strumming and that train a few miles away, haunting the night.

EKG?

2008-10-22T18:45:00.009-05:00

This picture was taken in the lobby at our 2 year follow up with Louie's cardiologist. It's excruciatingly difficult to get two "walker" walkers together in a photo frame. I was there alone. With Louie but adult alone. Chris was traveling for work. We didn't reschedule the appointment because apparently you don't just whip in to see the cardiologist and appointments are made well in advance. Unless it's really serious.

Screaming kicks off with the weight and height check. Don't even think about taking his blood pressure. Then, the nurse starts casually putting little stickers all over his chest and says, "okay, we'll get a quick EKG. I'm thinking, What? A quick EKG? I knew nothing of this EKG business. First of all, what's an EKG and second of all what's an EKG? As an aside and what I'll shamefully admit to you is that I still don't know what it stands for or, gulp...measures. But it came back good, so yay! Oh, what must you be thinking? But I do know that it's not nearly as scary as it sounds and it doesn't take long. Just a bunch of stickers and cords.

I simply can't explain the way my brain wanders out the door when I go to these types of appointments. You know, the big appointments. It's like my mind says, "Okay, you're on your own. Got everything? Good, good...see you in the parking lot afterwards."

As to why I still haven't looked EKG up? It's on my list. And in my to file piles. And under my couch. And in the dishwasher. Wrapped up with a diaper. I've successfully made myself feel extremely guilty. I'm about to sign off and Google EKG.

The good news is that Louie's heart still looks great. Just thumping away like it's supposed to. The bad but good news is that he will continue to be monitored. For some reason I was under the impression that after age two, the risk for developing a heart problem decreases significantly. Again, I should have asked, but that mind; she was long gone, in the parking lot reading a list of cardiology questions and eating doughnuts.

So, it's good that he will be monitored. Otherwise, I might worry in the future that it could develop later in life? Kids with WS will always be at a higher risk for developing a heart issue. If that made sense to you, please contact me because we're soul blogger friends.

Well, I'm off to the World Wide Web for some old fashioned Googling. And Chris is talking to his mom about a family member named Willie Jo. Willie Jo. I'd better go see what's going on with Willie Jo.

Break's Over.

2008-10-22T16:13:00.016-05:00

Louie's fall break is officially over. Otherwise known as The Louie and Ace hair-pulling challenge '08. Where are effective parenting skills when you need them?

I'm trying to prioritize my life. You know, put things in order of importance. I guess that's obvious, since that is, after all, the definition of prioritize, right? Anyway, that leaves blogging kind of at the bottom. But here I am, sneaking in a little unprioritized blogging! This will have to be short.

I'll try to catch you up on my life of endless excitement and productivity over the next few postings.

Why is putting sunglasses on our kids such entertainment? Pure comedy. Come on, everybody does it. If you have kids, then you have a picture of your baby that looks pretty much like the above pictures of Louie and Ace. Baby's wearing' shades. Good, clean fun.

Helping the Economy.

2008-10-11T22:16:00.006-05:00

Since having babies, my desire and funds for shopping have decreased dramatically. However, with this downturn of our economy, I've decided to help by purchasing extremely indulgent and disgustingly useless stuff.

I bought a $45 bra. $45? I haven't worn a real bra in 4 years. Just dingy white Hanes sports bra, with an occasional gray one for color and variety. At a time when I should be thinking about a 3 month emergency fund, I buy bras?

Until just last week I have never stopped to shop the dollar section at Target.
In light of my superfluous spending, I go dollar aisle style to find useful, cannot-live-without cheap stuff:
2 plastic scrubbers with screw on lid for dish washing liquid both of which have now been ground up by the disposal
1 "Go Green" beanie for ages 7 and up (yes, my children are under 3)
1 Elmo book with squeaky ball attached
4 pack magnetic yellow plastic refrigerator clips
2 pack Halloween themed plastic bowls for Louie to use for cereal
1 pair round earrings, white with brown flowers. I will never wear them. Never.

2 "The Office" pens

Maybe next week I'll get that microplane rotary grater I've been eyeing at Williams Sonoma. That's a joke. I would never buy one of those. How do people come up with this stuff?

Chris is sitting nearby eating Raisin Bran. Doesn't everyone love the sound of their spouse eating cereal? I mean, isn't it the best thing ever? And on top of that, I'm using his silly PC and it's really annoying me. I should go now...

Should He Stay or Should He Go?

2008-10-11T21:17:00.021-05:00

Louie has been on fall break for the past two weeks. His school has a balanced calendar and fall break is three weeks. I was apprehensive about him having so much time "off". This is the longest break he has had since starting early intervention two and a half years ago. He regressed in some areas during his one week Christmas break last year.

The first four days of fall break were, ummm...hmm...filled with hair-pulling, pushing, kicking and crying; but mostly hair pulling. Louie pulling Ace's. I walked in the room numerous times just in time to see Louie grabbing a handful of Ace's hair and proceeding to pound his head on the floor.

So far we haven't seen any regression; he has actually made progress. He is walking unassisted and without prompting about 70% of the time, making transitions between two different surfaces and going over door thresholds. He's also beginning to walk on carpet! And, he just started babbling "buh"! Trust me, that's big stuff.

Being able to spend this time with my two boys and seeing Louie continuing to make progress during his break provokes me to toss (toss, obsess, what's the difference?) around the questions about the efficacy of early intervention and pre-school.

When Louie is in school from 7:30 a.m. until 1:00 p.m. and naps from 1:30 p.m. until 4:30 and goes to bed at 7:30, there's not a lot of time for a relationship. Louie and I have spent the past two weeks connecting in ways we never have. Or haven't in a long time.

Louie has been "working" since he was 8 months old, when I practically blindly signed him over to the world, to the professionals, the therapists, the doctors. All with the goal to provide him with the skills to live in the world the way we live in the world? To act "appropriately"? To play appropriately? To make eye contact? To torture him with blood draws and echo cardiograms? I know, he needs these skills, these acceptable behaviors, the assurance of a healthy heart and thyroid levels.

Tonight, though, I sit and ask myself this question: When does this child get to be a child? And experience real, unprompted or self-made, self-directed joy? The way he has since he's been at home with us?

I've been missing spending time together since he started pre-K. And before that, his schedule was similar but at least I was with him more since some therapies were at our house. But he has made more progress in the past 9 weeks of pre-K than more than two years in early intervention. So is this about me? Or is this about him? Is it about living in a connected family?

We're loving not getting up at 6:30, not getting ready to go anywhere and staying in our pajama's till 10:00 a.m.. Lots of snacking, wagon rides, going to the park, listening to Louie's favorite relaxation music Cd's, doing puzzles and stemming out on stuff if we feel like it. Louie repetitively turns his maraca on, then off, then on, then to Spanish, to English, back to Spanish, low volume, high volume and repeat. We let Louie stay up until 9:00 p.m., one night, eating popcorn and reading People magazine, thumbing back and forth between Justin Timberlake and Jessica Biel's trip to Italy and the back cover, that just so happened to have an ad with about 500...can you guess? Road signs! He has such an affection for signage of all types.

We've been enjoying our somewhat lazy fall break days. Ace "saw" and felt the wind for the first time the other day. When was the last time you were there when someone became aware of wind? At first he was scared, bewildered; but then he began to understand it, expect it, and laughed as it blew through his thin brown hair.

Yesterday, Louie awkwardly pushed a toy grocery cart along the uneven surface of our backyard. Ace, close behind, was practically running to catch up, his grace and strength emitting from his tiny body like the sunlight splashing through the spaces between autumn's changing leaves. Two brothers, and for one, nothing is easy. For the other, it all comes with such ease and instinct. The miracle of human development. A fascinating miracle.

I've been watching the two of them a lot lately and thinking, if only I could stop time and hold this moment. If only I could wrap up every baby laugh and squeal, memorize every inch of Louie's wobbly string bean legs and Ace's chunky thighs, if only I could save these days to savor again later. Otherwise, how will I remember these miracles, these gifts, that are passing almost invisibly, like a steady wind through my life? These babies will become men. These moments will become memories left to blow softly in my hazy mind's eye.

Ragweed.

2008-09-17T19:39:00.011-05:00

For any of you out there experiencing any mom guilt or just feeling plain lazy, this could make you feel better. Here is a list of things I should have done today but didn't:

1. Shower

2. Get dressed before 11 a.m.

3. Get child dressed before 11 a.m.

4. Fold laundry

5. Put a new trash bag in the compactor; use paper bag on the counter for trash instead

6. Return emails

7. Return calls

8. Buy sunflower seed butter since Louie's school has banned peanut butter

9. Make vet appointment for our dog who I sort of backed over a little bit yesterday. I just heard a yelp and I immediately stopped the car. We checked her out and she's walking fine and acting normal. But we just want to make sure. I'm not that big of a slob. Am I?

11. Give children, covered in mac-n-cheese and avocado, a bath

This could go on but you don't want to hear every item on my short or long-term to-do list. You get the picture. Oh yeah, and I should have wet Swiftered my kitchen floor because yet again, my boys have black hands and knees from contact with floor. I'm feeling especially guilty about that one for some reason. But let me reassure you, I'm okay. I really am. Kinda of. I think. In fact, the reason I'm writing this is because I rarely have such a completely out-of-sync, greasy-hair day. At least I was able to accomplish all basic child care duties including diapering, feeding and disbursement of drinks. Here's what I actually did:

1. 8:20 a.m. Put Ace down for his morning nap 40 minutes earlier than normal so I could go back to sleep

2. 8:21 a.m. Went back to sleep

3. 10:00 a.m. Hear Ace awake, run in, throw some books in his bed and run out (thinking, what, I don't know...that he would go back to sleep?)

4. 10:05 a.m. Books didn't accomplish anything. Get Ace out of bed.

5. 10:15 Get back in bed and give myself a pep talk while Ace pleads to get up (in my bed). Up. Up! UPPPPP!!!!

6. 11:00 a.m. Stumble into Publix to get allergy medication. Maybe this is allergies, I'm thinking. My doctor says the ragweed count is high.

7. 12:00 Feed Ace, pick up Louie from school, put both to bed

8. 1:45 p.m. Go to bed

9. 2:00 p.m. Change Louie's dirty diaper

10. 2:02 p.m. Go to bed

11. 2:45 p.m. Change Louie's dirty diaper

12. 3:30 p.m. Louie is obviously not going to sleep so I get him up. Ace is up.

13. 3:35 p.m. Go back to bed and guiltily watch The Hills

14. 3:50 p.m. Boys start to get whiny. Put boys in "ball pit" which is our pack-n-play filled with balls. They can't get out. Repeat, they CAN'T get out.

15. 3:52 p.m. Guiltily finish watching The Hills

I'll stop now. Half of you are probably trying to find the number to Tennessee Child Protective Services. Today certainly wasn't one of the award-winning mom days I usually have!

I rallied around 4:50 and took the little guys outside for a while. And made their dinner. While I was making (boiling noodles) their dinner I heard a tap, pause, tap, pause, tap. I'm at the sink, draining macaroni. Putting trash in my paper trash bag. Tap, pause, tap, pause, tap. Ace is sitting below me "helping" unload the dishwasher (yes, I unloaded it - I was rallying!). It was such a subtle and unusual sound. I turn around, realizing it's the sound of walking. Louie is walking from the island to the chair. Independently. Not prompted. Not with one person tricking him by letting go of his hand while another person is holding a highly desired item. He was walking quasi-independently last week - quasi because he would walk independently if forced, prompted and bribed.

But today, it was his choice. He made the choice to walk. For the past two years, those are the steps I've been waiting for.

Snowflakes.

2008-09-08T20:18:00.009-05:00

I understand. Seems like every time you turn around I'm complaining or upset or the ever-present and somewhat dramatic "grieving". Okay, so fair warning, this is a dramatic, over-the-top, I have a knot in my stomach post. Shall we?

It seems Lucas is drifting farther (further?) away. I can't figure out why. The reasons I come up with stretch beyond my limits of thought at times. Could it be this? Could it be that? Should I do this? Should I do that?

"He's in there somewhere; he's not lost" Chris reassures me. Is it the life-sucking autism that keeps pulling him away from us, taking his smiles and his rare but hilarious cackle, and tucking them in his tattered pockets and stealing them away for his own amusement? I imagine that whatever it is - a gene microdeletion on chromosome 7, autism - to be one of those black ghost-like things with no face. Is that Death? Is that the "face of Death" I'm thinking of? I guess it is. I wish I could imagine it differently but right now, I can't. It feels like Louie is growing; but smaller and smaller rather than taller and stronger. A small, tiny boy. I can barely see him, his stick legs and sweet upturned nose.

I want him back. Last night, Chris and I chose, printed, laminated, cut and Velcro'ed hundreds of PECS (Picture Exchange Communication System) and made a travel communication book. Choices of activities, toys, foods, a schedule. A way for him to tell us what's inside. A way to help him not slip completely into the abyss, the folds of that smokey black robe.

Louie has used digital pictures in the past and it worked well. His teacher says he can recognize symbols now and we should be able to introduce PECS. Using PECS is easier because we can cut out the step of taking the digital picture and downloading them to the computer. Some things are hard to photograph too. PECS offers every situation, action, emotion and more all on one CD you stick in your computer and start printing.

Maybe this all could be because I never see Louie anymore. He's in school from 7:30 until 1:00, 5 days a week, naps when he gets home and then is up for 2 1/2 hours before he goes to bed for the night. 2 1/2 hours of which is spent doing the dinner, bath, bedtime thing. And, furthermore, he cries pretty much the entire time. Especially if Ace says anything. Anything. It's not enjoyable time.

It could also be me watching the two of them parallel. Side by side. Brother to brother. It's an awful comparison between a 13 month old and a 3 year old. One typical. One not. A brother silently sinking away and a brother begging him to stay afloat.

Ace has such a jolly spirit. His laugh is unlike any sound I've ever heard, a giggle coming from places like above the clouds or falling to earth on the hexagonal symmetry of a snowflake. I love his two front teeth. And his smooth baby belly. And he is doing all of this incredible human development. I can't get over it. I know, I know, I talk about this all the time. The awe in watching a genetically perfect being who is doing all of this feeling, seeing, pointing, this-is-a-crazy-crazy-I want-to-see-it-all-world thing! Pregnancy, childbirth, all those "is this for real?" miracles I thankfully have experienced.

Ace doesn't give up and will do anything to get Louie to notice him. Even if that means hair pulling or pushing Louie's walker. He follows him everywhere. Does everything he does. Ace has a hero; a hero who gives him nothing and asks for nothing. Not even a straight look in the eye. Of course, as a mother, it hurts to see that. We are thankful Ace can take the punches. I think I need to take some lessons from a 13 month old.

I have a feeling that Louie will always be Ace's hero. Not for what Louie gave but for what Ace was able to receive. That is my wish, my hope and prayer. A prayer I lift high and throw from the rooftops and mountain peaks. A prayer bounded up tightly, safely, bouncing off canyon walls; sailing away on the soft sway of the sea just so it will come back around even more breath-taking, beyond what I could have even imagined to pray for. And be answered.

So, here's what I'm grieving this time. I'm grieving that I cannot look at Louie's baby pictures, especially the ones in the hospital, the one where I'm holding him for the first time in the NICU, proud and innocent. Yes, that was still Louie. But it wasn't Louie with WS or autism. The black robe guy is nowhere in those pictures. That baby wasn't the Louie who would drown within himself.

But it is the Louie that's about to be pulled out of a deep hole by his family. We will take a rope, the strongest rope. We will train our muscles and our minds; increase our endurance. We will all make him grasp on, and slowly, we know it will be slowly, he will emerge. Right? He will emerge?

So, could it be that a snowflake is the perfect analogy for these brothers? I just read that "the ice that forms snowflakes is a clear scattering of light that is illuminated by the crystal facets and hollows and imperfections which make snowflakes appear white in color. There is a widely held belief that there are never two snowflakes exactly alike...In a more pragmatic sense, it's more likely that two snowflakes are virtually identical if their environments were similar enough, either because they grew very near one another, or simply by chance." - loosely quoted from Wikipedia. I don't believe in chance. I believe these two snowflakes, these two brothers will grow very near to one another and that the casting of their dark shadows will glisten with a halo of white.

It is Well - Kind of.

2008-09-03T14:02:00.036-05:00

I am completely blogocentric. At least I can admit it. A friend recently asked at "craft" night (not much crafting gets done), "So, are you going to tell us about whatever whatever or do we just need to read it on your blog?" She was so right! I have been referring people to my blog instead of just telling them myself! I mean, really, how lazy is that? Actually, it's just to build their suspense and what fun would it be for them to read if they'd already heard everything it says, right? Or is it better in person, the real person telling the story? Have I become too blog-headed to be able to tell the difference?

I'm borderline losing my bloggin' mind. Stuff like finding post-its written to myself from myself. I hold it close and examine it; I am baffled. What does this mean? What does it say? Google w/ H20 Haley? What the...? I look closer, think harder, trying to decipher the meaning. Who is H20 Haley? Then, I get it. Oh, right, it says "gargle with salt water. But with the word 'water' was written as H2O AND regular old 'water'." Of course that's what it means! Doesn't everyone need a post-it-note on their desk, reminding them to gargle when they have a sore throat?

Speaking of Google, my dear Internet search engine, would you agree it's almost like the 21st century crystal ball? A fortune teller in her brightly colored G-O-O-G-L-E lettering that sometimes morphs into random holiday or event themed lettering? Yesterday when Chris' neck was "out" or well, basically he couldn't move, I of course, Googled "stiff neck" like any good wife would do then proceeded to convince him that he had meningitis. You often hear, "don't get on the Internet, don't look it up, don't Google it." But what do we do? We Google it. It's ludicrous and yet it provides that immediate gratification. Of dangerous knowledge.

I am forever indebted to Google, as that is pretty much what led us to Louie's diagnosis. Sometimes, you big old Internet, you scare us pale. Nevertheless, you are loved. Just today I Googled "how to get poop out of carpet". Ace has had an ugly diaper rash so I thought it would be a good idea for him to air his chubby bum out on his way upstairs to the bath. He stops on the second step and as you probably have guessed, yes, he pooped. Any tips on removing poop stains from carpet would be greatly appreciated.

Poor Ace. He's had a rough time the past week. He was sick with a high fever, stomach stuff and sore throat. Better now but whiny and clingy yet clumsy and fearless. Not a great combo. Among the list of recent physical injuries: he pulled a side table over onto himself where Chris pulled him out from it and the red lamp that was piled on top it the table. The next day I heard a scream, THE scream that says "Don't pause, don't walk, get in here NOW!" scream. He had pulled a heavy dresser over. I found him beneath drawers and clothes and um...well...the whole dresser; this one scared me...with momentary thoughts of calling 911, but after a 45 second crying bit, off he went to explore more furniture. Then later, he tried to get in the tub while I was rinsing it out and ending up bonking the top of his head. He also drove his push toy straight out of the kitchen, rolled down three steps and landed on the concrete garage floor. I guess you're all probably wondering where I was. Well, I wasn't far. I was in close, close proximity. I promise. I hadn't run up the street to watch American Idol or anything, which isn't on right now anyway. These things, these accidents happen freaky fast. But at the same time slow....waiiiiitttt, noooooooooooo! Also, for some reason, Louie has a bruise around his eye. You know, you just know, that someone is suspecting abuse with all these facial bumps and bruises on BOTH children.

Ace has this obsession with putting things around his neck - pictured above with pink belt around neck. Oh yeah, and another picture of him "talking on his belt - or to him, at that moment, his phone. Anything is a phone these days. Which makes me think Chris and I talk on the phone way too much. Anyway, he doesn't wrap the stuff around his neck. He just carries it on his neck. A belt. A cord. A piece of yarn. A small blanket. A tie. A shirt. If it can go around his neck, then that's where it will go. Last night Ace got a rug-type burns on the back of his neck when trying to get one of those play telephones where the phone part connects by a string to the base, from around his neck. Chris asks me, "Is this normal?" I increduosly reply, "I don't know! How would I know? I am as new to this as you are. Do you think he might have 'put-things-around-neck' syndrome?" Anyone, anyone? Is this normal? I know nothing about normal. Especially when it comes to kids and "normal". Maybe this just means he's going to be really into wearing ties and scarves when he's older? Already accessorizing! Already a trendsetter for toddlers. Or do I call my pediatrician? "Um, yes, hello, I am calling because my son wears things around his neck and is in constant danger of choking." I often feel like a first time mom. What do the moms' of typical kids worry about?What are the big concerns? What are the games you're supposed to be playing with them. Because all I do is teach him all the "therapy goals": put puzzle together independently, stack rings or blocks, point at items in a book, shape sorters. Because I'm used to worrying about everything from kidneys to calcium to heart to words.

In a state of baffling aberration, I forgot about something big. Really big. My child. We have our pack and play set up in Louie's room with a bunch of those balls like you see in ball pits; the balls are great for giving Louie sensory input. So, one night at bedtime I turn on Louie's music and sound machine, shut the blinds, turn off the light...you know, creating bedtime atmosphere. I put Louie in his "ball pit" with a book to relax by fading daylight before getting in bed.

In the meantime, I ran to do something in my room. Then Chris calls me so I go downstairs to see what he wants. We eat dinner. We clean up. Mess around in the garage. Talk about our ten-year plan (ha!), argued about politics, you know, your typical evening at home. An hour or so later we went upstairs and heard Louie's shout. It wasn't a cry. He was M-A-D mad. He'd been in his ball pit the entire time; no longer fading daylight. Just complete darkness. For an hour or more! We don't have monitors because they are all broken and we didn't think we needed one right now. We thought we could hear them from downstairs. Apparently not. We also didn't expect I would leave Louie trapped in a ball pit (he can't climb out yet).

I'm sure, if he could talk, he would have said something like, come on mom, I like the balls and all but an hour in the dark, with only one book that I can't even see? No thank you! What the blog were you thinking? Put me in my appropriate sleeping area and don't let the door hit you on the way out!

This is really getting to be a long post. Maybe stop here and pick back up later.

The past few days I've been demolition gardening, for lack of a better name. The house we moved into had been vacant for about 6 months when we moved in so everything was overgrown. Demo gardening is about the most cathartic experience I've had in a long, long time.

One can take some fiercely pent up aggression out while demolition gardening (we'll call it D.G.). I highly recommend it. It sounds somewhat like torture. First, choose the hottest part of the day, because that's when your kids are sleeping. Don't forget your iPod, water, sheers, clippers, shovel, rope tree trimmer, rake, paper bags. And as you pull weeds and dig up plants with roots as long as Christmas lights you may enjoy cursing either the person who planted the random, ugly plant or the plant itself if you think it grew there spontaneously. Curse some more at the gnome (okay so there was no gnome but there may as well have been one), the bunny statues, plaques that say "Chipmunk Crossing" or "Mother's Garden" found beneath the overgrowth. Please, if you have these in your yard, I understand and respect that. They're just not for me. Right now. At this moment in my life. I may grow to love them one day which is why I am not throwing them away. Just saving them for the right moment when I feel I might need a 4 foot bunny in my yard. In the meantime, I sincerely, sincerely hope that chipmunks do cross your sidewalk and it brings you pleasure and joy.

D.G. gets the adrenaline going and it's no longer bothersome that sweat is burning my eyes. Then mulch. Here's a (un)helpful hint. Put your mulch as far, and I mean, as far away as possible from the site in which you are working. So then you can heave those 1.5 CU (42L) (??) bags over your shoulder about 12 times. Back and forth. Back and forth. Yell at the weeds some more. Get angry with the former owners, the people you've never met (but are probably the nicest people ever and here I am advocating cursing them!), who didn't plan this out better. Get as mad as you want. Sweat it all out! It's my new favorite type of gardening, if I must garden.

I bet the neighbors thought I was a hired gardener; mulching at the speed of light, (kids, might, huff, wake...up, any, can't breathe, minute, huff), pulling weeds with vigor. Tough enough to stand the midday heat. Tough enough to put my broken self back together. Yep, pretty sure people thought I was a professional landscaper. Not really but just let me hang on to that, okay? Some kind of strange end of summer, sweating, physical labor healing, I suppose.

My friend brought up brokenness the other day. I will generalize by saying that there is probably some brokenness present in all of us. Some breaks are deep, wide and hollow. Some are just cracks. The choices we have been given are to put the pieces back together or accept it for it's new shape. My last few blogs, maybe all of my blogs for that matter, have evidenced my brokenness. It's okay to break because we can usually put ourselves back together again. With time. And then the next time it happens, maybe we'll remember where the pieces go.

As I was going out to do some more D.G., a random thought came to mind. The words All is Well. A scripture? No. A song? Yes! Later, I Googled; the good ole' master information giver. The real title is It is Well with My Soul by Horatio Spafford, a hymn he wrote after a number of tragic events occurred in his life, including the loss of 4 of his children. I suppose this could sound strange, especially after writing about all my rage with the demo gardening. But after I read it, as I wiped a piece of mulch out of my eye, I decided it is well with my soul. For today, it is well. I felt a peace among the dead weeds, the unkempt landscape; the promise of new growth next spring.

When peace like a river, attendeth my way,

When sorrows like a sea billows roll;

Whatever my lot, Thou has taught me to say,

It is well, it is well, with my soul.

- Horatio Spafford

Hot-Wheeling in Holland or Wherever We Are.

2008-08-27T20:04:00.018-05:00

I came across this quote I had scribbled on a piece of newspaper but I can't seem to find where I found it or who it's written by. I wish I could say I wrote it myself, but I didn't. I Googled and Googled and found nothing. If anyone knows, please advise.

"...thankful for these walls. These walls that contain my unpredictable, crazy, sometimes messy, lovely life."

As you may have noticed, many of my posts contain within or end, with my desperate attempts to find the lovely parts of life. Just so you know, I'm not this positive person always looking on the bright side of things. In fact, many times I'm quite the opposite, clinging to a string of hope I hold loosely in my sweaty hands. Trying to shed a coat of bitterness I wear year-round. I'm always trying to make sure that no one thinks I'm feeling sorry for myself. And I don't want others to feel sorry for me.

As Penny, fellow blogger with a son who has the same dual diagnosis of Williams Syndrome and autism that Louie has, commented on my last post, we just don't know where the WS stops and the autism begins. I am in the process of preparing myself for the possibility Louie will never talk. I had a dream he spoke last night. Don't remember much of it. Don't know what he said. Just that he spoke. Leaving me today with a formidable, raw feeling of hope and dread and awe and realization.

Most parents who have a child with special needs have read the poem Welcome to Holland, an apt metaphor. But I'm not in Holland. I know the name of Holland. I'm pretty sure I could locate it on the map. In the very least, I could find the coordinates. My family has been uprooted and placed somewhere far, far away from coordinates. The land where those people live that you spend most of your life thinking, oh that only happens to other people. Until it goes and happens to you. Special needs? Huh? Williams Syndrome? What? Who? Who is William? Autism? Mentally what?

I don't know this terrain; I am not familiar with its climate. I'm lost and there is no map. I don't know the rules and they're not posted anywhere. I have no idea if this place will mend my soul or shrink it and shrivel it to the size of a raisin. I hope not. I think that's up to me. Because the one thing I do know about where I live now is that we are at war here. At war with ourselves. An odd war, because you're fighting to find the fight within you; enough to fight for yourself and your child. To navigate the turns and bandage your wounds. And somehow surrender to or conquer the Battle of Shock and Darkness. You know many who live here. Sometimes I wonder if it's not a faraway place after all; not Holland, not Italy. Or the United States. Just here. In the world. In which we live.

Speaking of battles, we had one with Louie a few weekends ago. After a year with that walker, Louie decided he would use it. Use it and abuse it. Rockin' and rollin', hot-wheeling around, turning on a dime, backing up, maneuvering corners. You get it. The kid knows how it works and uses it everyday to walk into and out of school. On grass, pine bark, whatever; his own gold-plated ATV. Like I said, he's mastered it.

Big test...a public place. An errand. We chose Office Depot for its small customer size, wide aisles and because we only had one or two things to get. Quick trip. Chris takes Ace off to get aforementioned items while I cruise the aisles with Louie. Doing well. A little distracted by the automatic opening and closing doors. Moving on. He stops and looks at highlighters. Further down, he is drawn to some shiny display of leather planners. Then, for whatever reason, he decides he done walking. Drops to his knees and starts the "eeeeeeeeeeee" cry. You can't see it in the above photo, but there is a belt and so he was strapped in and couldn't get out. He could only, as he did, fall to his knees and cry in protest.

Okay, this is where you may not understand what I did. Much we do as parents, special needs or not, disciplining, teaching, etc., can be done in a vastly different number of ways. A method that works well with children with autism and a method we practice often is based on some of the principles of ABA, or behavioral therapy. Ignore the undesired actions; praise the desired actions. So, I walk away. I can still see him obviously but I pretend to be looking at file folders. I had to win this one. If I let him out of his walker and carried him, it was he who took the gold (sorry, the Olympics having just been on and all).

We have to stop just to laugh. I can do this now. Now that it's over. Okay, so one thing we didn't consider was that this was the before school tax-free weekend. Everywhere that sold stuff was busy. Even Office Depot. Can you imagine what people are thinking when they see this whole scenario? This poor child strapped in a walker, on his knees, crying and pleading wit his eyes to unleash him from the metal torture device. And here, I, the mother, have walked away?

Chris told the story to someone the other day and noticed a part of the story that I'd already repressed. How I loudly announced to everyone checking out that Louie was perfectly capable of walking in his walker and this was his first outing to a store and I had to win this battle. But, you should know, that as I was saying this, I was WALKING out with Louie, still crying, but nevertheless, walking in his walker. We have since been to a number of other stores and restaurants and he has been walking in his walker, independently and almost, maybe, with a sense of pride?

Whoever "they" are, again, I quote another nameless author, they say that life is the toughest teacher for it makes us take the test first and then teaches us the lesson. I can buy that for now. I can wait for my lessons. I just hope I'm not graded too harshly on the tests.

Vowels and Consonants

2008-08-21T23:24:00.016-05:00

My mom left today after a four day visit and emailed when she returned home. She commented "Louie makes my heart hurt if that makes sense. It's the only way to describe him right now." I understand exactly what she meant. It's the same way I'm feeling right now. My heart just hurts for him. For me. For his grandparents.

You know, the funny thing about Williams syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. So, when Louie was diagnosed, I could make it whatever I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. I imagined Louie making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he doesn't fit the Williams syndrome profile. One of his doctors labeled him as "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

Louie has a dual diagnosis. He has both Williams syndrome and autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable heart.

I create all these expectations about what he should be like, according to the things I read, the doctors I talk to, the WS website. And then I find myself left with that feeling similar to the day of the diagnosis - not the "oh this could be anything I want it to be" part, but the wave of nauseous realization that this is what's happening. The reality part. Since Williams syndrome is rare, I wonder if my grieving process is taking longer? Since I had nothing to go by, nothing to compare it to? No knowledge of what I was facing and all the knowledge I have gathered has turned out not to apply to Louie.

I will continue to learn more about who he is and what he needs and stop reading about what he "should be". I will learn more about how he is not words on a page; he is the person sitting on the floor stimming out on a Crawl Ball - cause and effect toy. His current obsession. Cause and effect.

These are tough times with Louie. And as Ace reaches every milestone it's such bitter sweetness; or maybe it's a full-blown-elbow-jab in the ribs. Wow, this is the way a human develops. This is absolutely amazing. Chris and I watch in amazement, saying "Louie is just now doing that" or "Do you remember how long it took Louie to figure out the ball tower?" Ace has now surpassed Louie. We knew it would happen. Ace is beginning to walk and talk. Words! Real words! I need to call Mensa International right away.

So, Williams Syndrome isn't everything I thought it was going to be. Is anything? Hasn't everyone been disappointed by imagining something in the future and it turns out to be nothing like what you thought it was going to be? I'll answer for you. Yes. But haven't there also been those moments, those that you least expected that were amazing? The ones that aren't planned, the wet kisses from my boys, the full moon rising on the horizon, a brief but meaningful moment with a friend, sometimes just to let them know, "Yes, I'm still alive and I still love you." Camping on the beach cause you were too young to a.) afford a hotel, b.) think about and become frighted regarding the safety, c.) sitting on a lifeguard stand late at night, feeling the salty wind, watching the waves and the black water that went on forever and ever. d

We all struggle with the disappointments, unwelcome surprises and hurtful situations in life. We should own our pain and not feel guilty about it. Rachelle, breast-cancer survivor from my book club, said it perfectly the other day. "It's like if your whole hand gets slammed in the car door, it hurts. If your pinky gets slammed in the car door, it hurts." Doesn't matter what your hurt is or the cause. It still hurts. And that's okay. We are the ones who live with that hurt no matter how big or small we think it is. It's ours and we feel it and that's really all that matters. You have to feel it to get beyond it. But we can't lose ourselves so much in our pain that we miss out on those deliciously, hilarious moments that make you laugh until your side hurts or the appreciation of a sleeping baby; a sight that takes my breath away every time I see it. Sometimes we do, though, have to lift the covers in order to see these thing too. You know, go ahead and get out of bed.

My Dear Friends, I Thank You.

2008-08-01T21:30:00.003-05:00

Hello Dear Blogger Friends,

I don't believe I have told you lately, or ever, actually, how much I love reading your comments. And all your funny stories that make me laugh so hard. And all the support I get from all of you. I wish I weren't writing this mass thank-you but it's the only way to reach many of you. I just want to take a moment to acknowledge you and voice my appreciation for your friendship and support. Soon, I will be back to keeping up with your blogs as well. As you know, it's been a crazy, crazy July. To July, I bid you adieu and will see you again next year.

I know, you can't hear any more about me moving. I can't talk about it any more either. I just keep hoping for some "ahhh...everything is done and unpacked and hung up and filed" moment. Okay, here I am talking about it.

Let's discuss something much more interesting. I bought a waterpik over 3 months ago. My dentist said it was imperative that I use it everyday with this specific solution I mix at home to try managing some kind of gum gap thing that's going on. I haven't done it. Nope, not once. But it hangs over my head. Every single day. "I should waterpik, I should waterpik, I should waterpik." It's become my mantra. And every day I see that stupid 2 liter ginger ale bottle sitting empty, thrown carelessly to the bottom of the bathroom cabinet. The one I bought specifically for mixing my special waterpik solution. It just lies there like trash, saying "You should waterpik, you should waterpik, come on, just mix the solution at the very least." The only time I even touched the dumb gadget I ended up breaking the glass pik part and had to super glue it back together. Wow, it was good to get that out. I'll keep you posted. I know you will all check my blog many times throughout the day to see if I've updated regarding this matter.

Anyway, I just want to hug you all, near and far, friends I've known forever, friends that live close and far, friends that I've never even met in person. Blogging has been so good for me. Obviously it's my therapy. Clearly, I should probably invest in some real therapy some day. But for now, this is working and much of it is because of all of you. Thanks, guys.

More Self-Indulgent Complaining and Some Funny Stuff Too.

2008-07-29T19:45:00.016-05:00

Ok, so the boys are in bed. I can hear Louie's "Pure Relaxation", or whatever zen music a 3-year-old- with-William-Syndrome is in to, drifting from his room. He goes to bed listening to it every night. Sometimes he just lies beside his CD player, presses play and sucks on a pacifier (he doesn't use them during the day, supposedly) he had stashed for these moments. He turns it up too loud, well, too loud is an understatement. He turns it up as high as it will go and I have to rush in and say "Turn that 'Pure Relaxation' down right now! You're going to wake your brother!"

Chris is out fishing. I'm having Sprite and popcorn for dinner. Everything is starting to come together with the move. Everything except my "office" and my clothes. Once these two things are in order I think I'll feel much more in control.

I've been in the "nervous breakdown" type mode. Again, as I mentioned in my last post, I'm not sure what that means exactly but it sure sounds like something I'm having. Just the move and the trip to visit the in-laws and the surgery (though it was minor) and then the in-laws trip to our house (keep in mind, this is only 2 weeks after our trip to see them). And then the unpacking and the whole subdivision thing - which I both love and hate. People sure exercise a lot here. And that! I should put that exercise thing on my to-do list!

I'm also feeling a lot of guilt about this last visit with my in-laws. Bonnie, Chris' mom, and I are oil and water. Or is it oil and vinegar? I like oil and vinegar so it must be oil and water. They were here Thursday night until Monday morning. Chris and his dad worked on house stuff, such as installing a trash compactor and an ice machine. I'm not talking about an ice maker, like the one in your freezer and the ice comes out the spout on the front of the fridge. I'm talking a full size, like say, trash compactor size, piece of equipment that fits into the counter space. You actually loose a cabinet for the ice machine. It holds around, oh maybe, a TON of ice. This is a big thing in Chris' family. This ice. All of them have one. It's a MUST-HAVE. Chris' parents have two at their lake house. One upstairs and one downstairs on the screened-in-porch. I don't know, maybe this is totally normal and I'm the weird one. I just don't see how having that much ice is going to benefit anyone. It makes me feel really over-indulgent and guilty. I know. I've got some issues. But those go way back and will have to be discussed later. Preview - outhouses, the wooden end of a broom banging on the ceiling if showers were lasting too long - and we had to turn off the water between getting wet, soaping up and rinsing off.)

Anyway, so this left a lot of time for Bonnie and me to "spend time together". I will preface this by saying she has a good heart. And I know her intentions are good. But she is no fun. And I'm fun-loving (really, I usually am!). She worries about wax on lemons (putting them in your water), about grease or "sticky" on just about anything and everything. She follows me around with a mop. She is OCD clean, perfectly pressed, perfect-white-pants person. And I am so, so not that. I kind of secretly wish I were sometimes, though.

One morning, I was sitting on the floor in the hall outside the bathroom, opening a box of keepsake type things from when the children were born and she was putting on her make-up.

I say "I sort of get sad when I think back on Louie's birth. That time until the diagnosis was the darkest period of my life."

She says, "We knew. We knew something was wrong and we kept 'throwing you fleeces' (I have no idea what that means; she's been known to make up sayings like this) but y'all never bit." She said that about three times. The fleece/biting thing. I have some hearing loss in my left ear so maybe I didn't hear her right? Does anyone know any sayings that sound kind of like that?

Anyway, I say, "We knew something was wrong too. We switched pediatricians three times trying to find answers. We followed protocol for what you do in these situations."

She says, "I'm just saying like at 6 weeks, when he was 6-weeks-old you should have been doing testing."

I say, "You can't just spend tens of thousands of dollars doing tests for the millions of genetic disorders in the world." I think I said that. I hope I said that. Then I got up and walked downstairs.

She says, "Where'd you go?" as I was walking away.

I tell her, "Gotta get more coffee." That really got to me. Bad conversation. You never want to be told that you should have been doing more for your child than what you did. We thought we were doing everything we could for him.

And then there's the do we have one more child question that's been hanging around lately. I just turned 35. I want to get the young ages behind me quickly so I'm okay with having kids close in age. My doctor said now versus December wouldn't make a difference but if we're talking now and a few years from now, he'd definitely recommend sooner rather than later. Not that later wasn't possible.

I have enjoyed this typical parenting experience with Ace. I do not love Ace more. I just have loved having this typically developing, milestone-hitting child. I would love to experience it again. It would be hard having three and especially with one having special needs. But I can't help but to feel someone is missing. That's what my heart says. Chris' heart doesn't say anything, on the other hand. But his brain says a lot, like, "what if we have another with special needs, what about all the time it takes with a newborn, what about money, what about how horrible you are during the gestation period?" My brain says all those same things too.

So, I had an OB/Gyn appointment today. It was just your standard check-it-all-out appointment. Unfortunately for everyone, I had both boys with me. Louie has been home from school since he's had the stomach flu and my babysitter wasn't available. It takes Dr. Black more than 30 minutes to get to me. Louie and Ace were strapped in their stroller with all kinds of toys and snacks. This worked. For a while. And then it didn't. It so didn't work. I let them out of their stroller. They're still crying and whining but at least a little less as they begin to "explore" the room. Ace starts eating all the snacks that had been dropped on the floor. Dr. Black comes in and I profusely apologize for the food and the toys and the shoes strewn about and all the crying. He was kind and understanding. Then Louie goes over to the black and silver trashcan. The one with a lid. And starts opening it. Dr. Black tells him not to do that and then looks at me and says "I just don't want him to get someones blood on him." Yeah, me neither. Thanks. Seriously, thanks.

Finally (as in OMG, I've been here forever - don't get me wrong), I'm in the stir-ups. In the middle of the examination, gloves, long q-tips, plastic bottles and all, Ace starts screaming. I don't use the word 'screaming' lightly. I look down to see that they had gotten in my purse and found my cinnamon Altoids, opened them and they were all over the floor. Ace had one in his mouth. Those things are hot, you know? Dr. Black is between my legs so I scream "He's got an Altoid in his mouth!!!" The nurse runs over and gets my sweet little one-year-old (today's his birthday) and saves him from the Altoids. I'm sure my visit will be remembered fondly by each and every staff member.

Just wanted to update you all on what's been going on. I've missed blogging and missed reading all of your blogs. Getting back into the swing of things though. Slowly. Getting there.

By the way:

Happy Birthday, my little Ace. One year ago today you were swaddled in my arms. We had just met a few hours ago. And I was in love.

Looking Up. Or at Least Putting it on My To-Do List.

2008-07-14T19:52:00.014-05:00

Do you ever look up? I mean really sit down and look up at the sky? I just did that and in doing so realized I never do it and it's nice. It relaxes some muscle in your eye that never ever gets any reprieve. No rest for that bottom eye muscle. Just work, work and no play. Looking forward. Looking down. Looking in our rear view mirrors. But when is there ever a time to look up? Just to look at the sky and the tops of the trees glowing in the yellow of the setting sun? Just to look at an individual leaf? Lovely. Lovely, I say. However, my moment was not all that tranquil since the neighbor's (who appear to be having a patio built or something) workers are still there, even though it's almost 8:00 p.m., with the jigsaws, jigging or sawing or whatever.

So, I've been absent lately. From blogging. But very much present in the middle of a big pile of craziness I call my life. Let's start with the packing. We packed our old house up bit by bit so when we returned from vacation, we could pretty much be packed and ready to move. Good idea. Not really accomplished, though.

Okay, so the vacation. Beautiful town (Fairhope, AL), wonderful being all together, quaint bicycle rides along the boardwalk by the bay. But more packing. A bag for the pool. Pack a bag to go out to eat. Pack a bag to go to the beach. Then, there's the rest of the trip. Remove kids' clothes. Apply sunscreen covering the bodies of two 20-some-pounders - with one recipient making it extra challenging by thrashing about like those stupid bass my husband is in love with. Put on swim diaper, swim suit. Don't forget, pack a bag. Swim. Back to room. Remove swim diaper and suit. Put clothes back on. Pack another bag. Take off more clothes. Eat. Pajamas. Pack a bag.

Louie recently started his first day of public school. I expected it to be a little sad. Maybe a misty-teary-type moment or two. I did not expect a full on melt down. That's me; not Louie. Me. Completely freaking MELTING-like-lava down. Louie is in a self-contained classroom. All of the children in his class have autism. We'll discuss this on some other post. I know self-contained vs. inclusive classrooms for children with special needs is a controversial topic among educators and parents alike.

Louie's school has a balanced calendar and the longest break is June and July when they are out for six weeks. During this six week break the teacher holds two weeks of class (shortened school day). The extra weeks work out to be every two weeks during the break so that the kids aren't out of school for more than a two week period of time, as children with autism need routine and can quickly regress without constant interaction, guidance and instruction.

Louie's first day was the first week back from the regular school year, during one of these "extra" school weeks. In the interim, between the regular and "extra" school week, the classroom was moved down the hall to a bigger room. As you may or may not know, children with autism don't like change. At all. So here they had been out for two weeks and then when they returned, everything had changed. Not happy. Lots of stimming behaviors, lots of repeating phrases and words, lots of just plain losing it. Every kid was in full on "I HAVE AUTISM" mode. I thought to myself, "This is not the place for Louie. This is wrong, wrong. All wrong!" ("Hello, Denial. Where have you been lately?"). Everyone, all the kids, Ace, me - everyone was crying. Except Louie. He was fine. Thank God. Seriously, thank God. If he would have been crying too I'm pretty sure I would have taken him and ran far and fast. Instead, I just grabbed Ace and ran to my car, both of us crying like babies; at least he had an excuse being a baby and all. So I drove home sobbing and messy crying and my whole stomach just convulsed from it all. I'm telling you...this was a major freak out.

But, alas, there is good news. When I picked him up that afternoon, he proudly walked out in his walker (this is big deal), smiling, the happiest kid ever. He used to lose it when I showed up to get him at preschool. Just cried and clapped for "more" when he saw me until I picked him up. He doesn't do that here. It's totally and completely where he needs to be. He's already made a ton of progress. It's his place. They have visual supports everywhere in the classroom. It's structured with a ton of teacher support. He's in his element. His element. Not mine. I understand that now.

Okay, so then there was my appendectomy. That's a boring story. It just happened one night at 4:00 a.m. There was only one memorable moment and it was right before I was about to go to surgery. Chris wasn't able to be at the hospital with me since someone had to be with our kids, right? He and Ace came up for a minute and was able to talk to me right before I went in (Under? The knife? Whatever. Yuck.); I guess to say hello/goodbye in case I kicked the bucket during surgery. Then he left to go pick up Louie from school. And there I was alone on that white railed bed with curtains on each side and other patients on either side of those curtains. Here's where it gets blurry. Oh morphine, you silly, silly, where-have-you-been-all-my life drug. Just kidding. That morphine. Isn't it just awful? Anyway, the anesthesiologist (I'm pretty sure that's who he said he was) came to talk to me and sat down by my bed. I told him I was afraid. He said he understood. His kindness was reassuring. Or maybe it was the drugs because right after that they said my name and it was over. Is that a bizarre feeling or what? There ya have it. Appendectomy. Check.

Oh yeah and it has to be said that I thought I was going to die the next day when I had some kind of delayed reaction to the anesthesia and threw up every 15 minutes for 5 hours. Keep in mind this whole time we're trying to figure out when we're closing on our house, still packing and all that. Well, I say "we" but really it was just Chris since my head was in a trash can. He was taking care of the kids, me, trying to check in with work intermittently, all the house stuff. It was a lot for him all at once. He came in during the middle of my puking my organs out and said "I'm about to have a nervous break-down." (P.S. Seriously, what is a nervous break-down because just judging by the name I would say I have one of those about every day.) Anyway, I just remember trying to talk and reassure him but all I could do was move my mouth. No sound. Okay, so really, that's the end of that story.

We've moved into our new house. I'm not going to bore you with all the gory details. But I did realize during all of this is that moving is one of those things in life that you just simply forget how very bad it is. And then when your friends complain to you when they're moving you just kind of tune them out and mumble something like, "Mmmm...that stinks for you. Sorry." Kind of like how you do when people tell you their dreams. Except I like to hear Chris' dreams. They are interesting to me. Speaking of dreams, I have to tell you (I know, I know), the other night I had a dream that Ronald Reagan bought me a portion-sized box of that cereal Pops. It was 10 cents. He got one too but he didn't have to pay for his because he worked for the government. And this all took place in the convenience store next to my elementary school. Hmmm. I don't know what to tell you about all that. Oh yeah, we got milk too. A small pint-size.

I feel like I have so much more to tell you. But as you can see in the pictures, I just simply can't live like this anymore. This chaos. This asking "where's that ointment for Louie's rash?" "Hey, Jenny, do you know where the meat strainer thing is?" "Have you seen the nail clippers?" It's got to end! It's true as with anything in life. Some people are better at things than others. Some are better movers than others. I've come to realize I'm not so good. I thought I was organized; that I'd labeled each box with such specifics. How could I have been so wrong? So very, very wrong? I have a friend who I witnessed, who I saw with my own two amazed eyes, move in to her new house in the morning and was serving chili to a crowd by evening; kitchen completely organized and put away. She's good that way though.

Well, I'm off to get organized. Find some order. Put away some clothes. Consolidate my to-do list. But I'm also going to try looking up more often. At the sky and the trees and the birds. You know, exercise that bottom of the eye muscle. And not let all the moving and school and the packing of bags make me forget about occasionally just looking up. There's cool stuff up there.

I'm Supposed to be Packing but Instead I'm Blogging.

2008-06-11T09:29:00.011-05:00

Lately I've been fumbling between rushing around and lazily procrastinating. I'm sorry to the mommies I stood impatiently behind yesterday during a "rushing around" moment. Just inside the doors of Kroger, you both blocked me while you frantically wiped down your carts and kids with disinfectant wipes. Yes, that was me rolling my eyes, shifting my weight from one foot to the other in hurried exasperation, heavy sighing. Yes, that was me, the rebel mom who didn't use the wipes, who just wanted to blow through Kroger in 5 minutes or less to get the necessities - milk, juice, Three Musketeers new dark chocolate mint mini's. I'm sorry, okay? I let you down. I didn't support your caring, responsible, germ-free ways.

I'm afraid I have a false sense of security about how much packing I've done. Just because the pictures have been taken off the walls it feels like a lot more has been done than what I know to be true. It's behind the cabinets, inside the closets, under the bed; those are the places that get you. And overwhelm you. At least, so far, this is one of the most organized moves I have ever participated in. Even Chris is on board. Last night he brought up some vacuum bags to put with the other vacuum bags so they would all be together. That's HUGE! Instead of just stuffing those found bags in a random box, he brought them upstairs so that they could all be in one place. My heart swelled with pride and skipped with joy.

We all the supplies. Lots of empty boxes. Tape. Markers for labeling. Lots of newspapers for wrapping. I stare at them. I carry them to another room. I rearrange the empty boxes. I decide I have more important things to do. For example, going through my phone and assigning various ring tones to my contacts. Sonar for Chris. Crickets for my dad. Sci-fi for my mother-in-law. This is very important work. A task that just must be done. And of course, blogging about procrastination. Isn't that like the pinnacle of procrastination?

Sitting outside this morning, enjoying my coffee (procrastinating...I never sit outside to drink coffee), I thought about this house and all the things I will miss. There is an elementary school behind our house. Prospective buyers often asked us how loud it was and if the noise bothered us. The answer, which I only just thought of, is if the sound of children playing is bothersome to you, then yes, you might consider it loud. But you can only hear them if you're outside and to me, it's quite a lovely sound. Children at play.

When we bought this house it had been a rental. It had not been loved. We painted its dirty walls. Uncovered hardwood floors under layer upon layer of vinyl and linoleum. We put tile on the counter tops, installed new hardware, put up blinds and curtains, gave it a new roof and covered the old chalky aluminum siding with a nice taupe. We planted azaleas and monkey grass. We hung a flag and trimmed the trees. We loved it like a house should be loved and it became a home.

These walls have seen so much joy and so much heartbreak. We brought baby Ace home to this house. We celebrated Louie's first birthday here. And, of course, that night we sat on the back steps, crumpled heaps of brokenness after receiving Louie's diagnosis. We've come a long way since that night. A lot of grieving and a lot of healing has taken place. There is one thing I will be leaving this house with that I didn't have before (besides Ace) and that is an anchor in the present. The reason for this change, for this new in-the-moment me, you might assume is that I've had some epiphany or inspiration; that spiritually I've reached new ground. But it's not that. Actually, it's pretty much fear-based. The reason is that the future is a scary place to go now. So I don't visit it as often. And I just became cognizant of this last night...that I no longer tell myself that worn out line, "Well, when this happens or that happens, then I'll be happy." I'm just happy today. And that's really nice. It's a gift and I'll take it. I will take that anchor and cling to it.

A Love Letter

2008-06-04T14:22:00.006-05:00

My Dearest One Way Sign,

Well, the verdict is in. Just as we suspected. I overheard the P-Units talking last night and we are in fact moving. They've been saving all my diaper boxes; the Portable On Demand Storage unit sits coldly in the driveway; I've overheard the many phone calls with the realtor. But I've been in denial. Until last night when it became plain and clear. I can't ignore the signs (excuse the pun) anymore. They are rushing around, actually putting stuff in the diaper boxes, sorting through things for a garage sale, and generally running around like parents who have to move their entire house the week after they return from vacation. Good times. Good times.

Anyway, get this. We're moving to a subdivision. Seriously. A subdivision. I don't understand them and they're American consumption mindset. Especially during a recession. They say they want more space, more closets, more this, more that. What they don't seem to be considering here is what this is going to do to you and me. I simply can't bear the thought of leaving you. Alone at the end of the street with only strangers nearby.

I know, I know. I understand that you can't leave Battle Avenue. And that you are needed to direct drivers to not drive in both directions on your street. Your job is important. You save lives. I get it. Let's try looking on the bright side - my parents have friends who live in the neighborhood so I'm thinking that I will at least get to visit on occasion. It's not like I get to see you all that much as it is. Just so you know, I give them the picture of you all the time. That's how I "ask" to go see you. Many times they dismiss me and say "Not right now." "Well, then when?" I ask. "When?"

My parents think they're doing me a favor by allowing me to see you once, maybe twice, a day. And when they finally do take me to see you, then they set that stupid timer for 3 minutes and then make me leave when it goes off. You know what I'm talking about...you've seen it firsthand. Do they really think 3 minutes is long enough for us to be together? Don't they see my agony when they rip me away from you? Don't they see the pain they cause? They simply don't understand me or our relationship.

I have to admit, I was wooed by a handicapped sign the other day. But quite honestly, it did nothing for me in the end. It was too small and I don't care for the blue color with white lettering. It's nothing compared to your bold black block letters set strikingly against the chalky bone white. Your steely strong body. The way you say the same thing on both sides. You amaze me. Your beauty is undeniable. You always make me smile. In fact, I smile the minute I set foot on the sidewalk and I can see you standing strong in the distance. When I finally get my hands on you, I find it so very hard to let go. I just simply want to hold you and look up at your beautifully delightful black and white face.

Please know, it's not my choice to move. I don't want to. I will think of you often. You are my one true love. And you always will be.

S.W.A.K.

Yours Truly and Forever,

Louie

-n-

One Way

4-Ever

Hello Summertime. I've Missed You.

2008-05-30T19:16:00.005-05:00

It's not officially summer but it certainly feels that way. This all began a few days ago when the humidity made its heavy way to Tennessee and settled in for sticky, bug-biting, lovely long summer days.

I do love the seasons. I love how perfectly and strangely and distinctly different they are. This is something I have come to appreciate more and more. Except spring. Spring is a huge transition for me. Coming out of the winter gray into chirpy green and blue days. It's just too much. My pasty skin practically blinding in the tell-all light of spring. Then the time change comes along and messes practically everything up; your kids' sleeping, your own sleeping, light. Suddenly there's too much light. Wait, what am I supposed to do with all this daytime? Getting cozy on the couch with popcorn and the remote seems wrong. Lazy. I should be outside...pulling weeds or some other spring-like task. Spring requires too much. Okay, like I said, I'm in the process of appreciating all the seasons.

It's sticky and hot and Friday. It's a good day. We had a follow up meeting with the school yesterday. It went well and I feel like we came to a fair compromise. But today I feel like everything has been completely drained out of me. Sucked out of every pore. I guess I was running on adrenaline. For more than a week, it kept me going. Fighting for your kid requires a mental strength that you don't even know you possess. But you do and you always have. Ever since you became a mom. I think it is a gift we are given with the birth of a child. Superhuman mommy strength!

I'm so glad the meeting went well but I feel as if I've been studying for a big test and it's finally over. I've taken it. Now I don't want to see the book; I don't want to see the teacher. I don't even want to be happy that it's over because that would involve me thinking about it. Right now I can't think of it. I can't talk about it.

I'm glad it's summer. Pre-summer summer. Carefree and flip-floppin'. Summer always reminds me of orange sherbet. Whenever we visited my grandparents in the summer we got orange sherbet after dinner. More exciting than you even know. Anyway, summer also reminds me of the whippoorwills of my childhood. The sherbet was the city treat. The whippoorwills were every night of my youth. Their long hauntingly beautiful calls, their timing perfect, as twilight turns to the fallen night.

I'll get on with enjoying the summer and doing summer-like activities. But right now I'm diffusing. My fight-or-flight-reaction was strong but now I am weak. Excuse me while I go get cozy on the couch with popcorn and junior mints. Even while daylight still exists. It's dark somewhere.

Baldy

2008-05-28T19:06:00.009-05:00

Chris has had some time off work. Not to go anywhere, just to use up vacation days. After the first day or so beyond the length of time he would normally be home, it becomes a little awkward. It's like we're in some sort of family time capsule where there is no day of the week. "Today is Monday? No, wait, it's Tuesday." We start to overlap each other on duties and then end up not doing them at all. "Did you give Louie his medicine this morning?" No. The answer is no. No one gave him his medicine. It's similar to those dreams you have where you wonder if maybe it wasn't a dream at all because it was so normal. Like a dream about running errands, getting your oil changed, going to the cleaners.

This time with Chris lurking around the house begins in a haze of confusion but ends with that day-after-Christmas feeling when he goes back. We finally get in the flow and start operating as a team; one of us cooks while the other bathes the boys; Chris folds the laundry and I put it away; I clean up the toys while Chris pours Louie's milk; we go out to lunch; play in the backyard. We're grooving. A finely-oiled family machine. Conversation increases in both frequency and quality. We have time to discuss the nuances of day beds versus pullout couches. I tell him about a woman I overheard talking loudly on her cell phone in Target about how her insurance won't cover her hysterectomy (is nothing private? Nothing?). Anyway, point is, we have had a lot more time for both meaningful and silly conversation. It's been nice.

During one of his days off he got a haircut. The salon is fairly open so the customers and stylists are all crammed together. A fifteen-year-old with hair to her waist sat next to him with two or three stylists working together to try to comb out the massive head of hair. Chris commented "Looks like you've got some dreads going on there." She looked at him and said "Whatever, baldy." As in "You are a balding-thirty-something-man who needs to mind his own business." Poor Chris. As if this isn't something he already worries about.

And so this sparks a conversation between us about the insults we endured as kids. "Kids called me egghead...man, that stuff sticks with you, " he tells me. I try to relate but have a hard time. Either I've completely blocked it all out or it didn't happen to me. Not because I was super popular or anything but just because my school was small, redneck, rural and poor and we were all pretty much in the same boat. The only thing I can recall is in middle school when my friends made fun of me because my butt wiggled when I walked. So I tried my best to walk so that my butt would not move at all. Difficult. Very, very difficult. "Is that all you got? I've been hearing about that butt thing for years." It's all I got. Sorry.

Which led us to the "I want to keep my child locked in his room forever" conversation. Every parent has had this thought at one time or another. This feeling, this innate quality we have as parents, is full of so much pain and so much pure and simple love. Protection. We want to protect them from the hurt that we experienced. From the hurt that we know they may experience because of the way they walk, the clothes they wear - or don't, the shape of their beautiful, oblong head. Kids can be mean to one another. They pick out the most permanent detail to exploit, the detail the child can't change like the color of their skin, the way they talk, the size of their nose.

But I try to tell myself and Chris, that there are also the children who are kind. Who you lie next to at sleep-overs and giggle until the sun rises. There are the kids who share their lunch, who help you with math problems, who hold you tightly when your first love breaks your heart. And who wants to miss out on those kids?

Chris goes back to work tomorrow. He's out fishing now. Enjoying the sunset, calm waters and the first fireflies of the year. He needs that time. That perspective. That space. We all do. But I would speculate that he doesn't put it all out of his mind. That as he casts his rod into the smooth lake water he wonders how he can protect his boys while letting them go at the same time.

I Wish.

2008-05-22T15:52:00.005-05:00

Louie has a diagnosis for autism as well as Williams syndrome. We don't know for sure that he has autism because there has been some disagreement among doctors. But the diagnosis has allowed us more services through our early intervention program. It's interesting because sometimes it feels more like Louie has autism than Williams syndrome. I thought the dual diagnosis would help us receive more services in the public school system as well. But that is yet to be seen.

Louie's first IEP meeting was held yesterday. And so it begins. I had hoped for more. For more understanding and less resistance. Louie deserves extended school year services. He meets all the criteria. They denied my request, ignored my proof of regression and wouldn't provide their denial to me in writing. So now here I am. Wondering and wishing and not knowing.

I wish I didn't have to do this whole IEP, special education, therapy, make-sure-everything-is-documented-or-it-wasn't-said thing. I wish it were simpler and our children were given exactly what the law says they should get. Sounds simple but its complexities already make my head fuzzy. I don't know what to fight for and what to let slide. I don't want to start my relationship with the school off on a sour note but I want Louie to have every opportunity available to him. Louie simply doesn't have the opportunities most of us are given just by being born. Opportunities to start, to fail, to begin again, to make choices, to drive our cars fast on a summer night with all the windows down.

I sat on my patio last night and realized again what it means to be an advocate. It's not a matter of being right or who's pocket the money comes out of or revenge for the school's lack of, ummm...charisma. It's a matter of human rights. It's a matter of society's responsibility to care for those who cannot care for themselves. It's a matter of taking the strengths that Louie has and making them mean something. It's up to us to shape those strengths and mold them into assets that will give Louie opportunity. Isn't that what's it's about? Opportunity? Hope? A future?

I want Louie to do the things that other 3 years olds are doing. But he isn't and he won't. I still sometimes find myself thinking "Well, when he learns to fill-in-the-blank, then he will be close to catching up." And then gravity takes hold and the weight of the truth bears down on my disillusion. He won't catch up. He will never catch up. So our goals and dreams for Louie need to be adjusted.

What I want is for him to learn life skills. The skills that come naturally to most of us; the ability to feed ourselves, brush our teeth, get dressed, shave, balance a checkbook. I want Louie to be able to do these things. Maybe this is obvious and something most other moms of kids with special needs have already realized but it just crystallized for me. My goal for Louie is that he is able to have some sort of independence as an adult.

Louie may not ever talk. This has only been a passing thought in the past, quickly dismissed and ordered out, but this time it has taken a seat. It's a real possibility. I am not trying to be dramatic or negative. Nor am I overreacting. I just know too much now. Louie's vocalizations have not really changed since he began vocalizing at 6 months or so. He rarely babbles any consonents and his expressive communication, including gestures and signing, is little to none. There is a window of time for a child to learn to talk. After it closes, it's rare speech will develop. Especially conversational speech. That window is not yet closed for Louie. And in my mind, the window will never close completely. But Louie may never talk and I must begin to prepare myself for that possibility.

Ace, nine months, has almost surpassed Louie in every developmental area. I guess that's why I have a hard time with the public school saying no to our requests. No to a 3 year old who doesn't walk independently, talk or possess any self-help skills. What more do they want? I can't imagine. I'm not asking for the world from them. But I am asking for the world for Louie. Does that make sense?

I wish, I wish, I wish right now. I wish I knew someone who has been exactly where I am. Someone who sat on their patio and wondered why the line between compromise and complacency is such a faint one. I wish I had my degree in special education and law. I wish Louie would say "mama." I wish I knew how to prepare to raise a child who doesn't speak.

Most of all, I wish Louie could run in the school office and say "Hey, principal! I don't need your so-called stinkin' special education!" and then he would bound quickly out the door, out to the playground where he would kick the ball causing a cloud of dust to hazily rise up into the afternoon light, the rest of the kids, his friends, would laugh and run toward the rolling ball. I wish that's what Louie could do.

One Year Out: Reflections on Losing a Child

2008-05-14T14:15:00.003-05:00

Joyce Heil, our pediatrician's wife, recently shared this essay with me. It touched me deeply and gave me strength at a time when I needed it. She gave me permission to post it on my blog. I thought many of you could relate and possibly, after reading it, take away some of her wisdom and lovely perspective on raising a child with a disability. She wrote this a year after their daughter Jillian passed away. She had Rett syndrome.

One Year Out: Reflections on Losing a Child

By Joyce Heil

We lost our eleven year old daughter, Jillian, a year ago. She had a viral infection and suddenly her heart developed an arrhythmia that doctors could not fix. While her death was sudden and unexpected, she was at risk for premature death because of her disabilities.

Jillian has two older brothers, now 15 and 14, and a younger sister age 6. I would like to share with you a few aspects of our journey this past year.

Most people feel the loss of a child is catastrophic. And it is. But we lost a lot of our daughter years ago when she regressed in her development as a baby. There were so many losses along the way as she missed milestones, lost what ground she had, and suffered the distorting of her body. We tried as a family to look at those losses in the face and grieve them, at the same time receiving who she was and the gift that she was. This year has been a continuation in that path of grieving and rejoicing that began with her diagnosis.

As you all know well, caring for a disabled person is challenging: anticipating needs for someone who cannot tell you, managing the medical treatments for a complicated patient, balancing the needs of this child with the rest of your family and your own life. These are hard things. We have seen since Jillian is gone, how she called us to a place of unselfishness that was good for us as individuals and as a family. Having someone around you who constantly demands that you think outside of yourself is truly a gift. After Jillian died, my then 13 year old son said, "Mom, I don't think we get along as well as we did when Jillian was with us." And he was right. Jillian called us to a higher place.

Similarly, we recently took our first big family vacation without Jillian. We flew to southern California for a family reunion. I don't know about you, but when we traveled with Jillian, we had to really function well as a family just to survive! My husband and I had to work as a team. The boys had to help push the wheelchair or corral their younger sister. Everyone had a job. Now it is easier. The boys can listen to their music, Paul can nap, I can read, but we are at risk for being short with each other, self-absorbed and independent. Now, we had to fight to be a team even though the trip was so much easier. And we were not Jillians' ambassadors anymore. We were just a regular family. It is not bad to be a regular family, but I missed what Jillian called out in others as we pushed her chair. She brought out the best in people, in us and those we met.

I miss Jillian's smell. I miss her soft hands, her furtive glances, her smile given when least expected. I miss her simply being present.

She taught me that suffering is wretched and that wretchedness must be faced. But even when we want to run away so bad, brokenness brings a kind of life on this earth nothing else can. I don't know how you feel about heaven, but one day my body and mind will be broken, too. And I think she will be waiting to greet me. I'm excited about that day.

The work that you do, the caregiving you offer, the tears you shed, the love and joy you give and receive on your journey with these children is some of the most important and transforming work on the planet.

Sophisticated Palate

2008-05-10T10:10:00.014-05:00

Ace is a good eater. It's refreshing. He has not yet met a food he doesn't like. However, having said that, "What does he have in his mouth?" is the big question around here lately. As Ace has become mobile, he has made it his mission to point out how poorly I vacuum by finding all kinds of crazy things on the floor to put in his mouth. See photo above where is scavenging like a puppy under Louie's high chair.

Let's see. Things I've fished out of Ace's mouth over the past month. A piece of black rubber. Um mm...yeah, I have no idea. He somehow found it on our black and brown rug. He has some kind of baby superpower vision that no one bothered to tell me about. 3 raisins in mouth and one in each hand; again, found on a black and brown, raisin-colored rug. The tip of a balloon. I know, I know, yet another choking hazard. An absurd number of leaves and those little pod things that fall from trees. Paper. Lots and lots of paper. Lint balls and dust bunnies galore. Chips of wood. Seriously, come on! Wood chips? I am not making this up. And no, we don't have a wood burning stove or a fireplace. One was about an inch and a half long and knife-like. While I may not be the best at vacuuming, I'm not that bad. Where does this stuff come from? I want to know! And the icing on the whole big pile of random things to be found on the floor...a dead bug. "What's he got in his mouth?" I ask as I place him flat on the floor and finger sweep his mouth. Out comes a wing. Finger sweep, avoid teeth. A crispy brown body. Finger sweep, ouch, he bit me! Then another wing and legs. Another leg. "Ace, don't eat bugs!"

His personality is getting bigger. It's fun watching it grow. And stay the same. Babies seem to be born with an essence, inherently and completely theirs. Their soul? Their spirit? I don't know exactly what it is but you can see it in every newborn's face.

Ace is changing every day. Each stage is new and different and exciting. However, I know there is something about him that will remain the same. Yes, he will change and grow, change and grow. Eating bugs and table scraps today, sushi and Starbucks tomorrow. But no matter how old he is, as his mother, I will always be able to see what has not changed; what has been there since the day he was born.

To all the mothers - Happy Mother's Day! Sending my love to you all. You are amazing.

One Way Ticket to the One Way Sign

2008-05-05T20:17:00.003-05:00

Louie loves a one way sign. This is in no way sarcasm or joking. When I open the front door he wants to book it out the door and down the sidewalk. Now, when I say "book it", I mean the fast crawl. On concrete. Doesn't that hurt? Seems like it would be an incredible incentive to walk but...I digress.

I have always just assumed that he remembered the way to the school's playground located behind our house and that's where he wanted to go. What kid doesn't want to go to the playground any chance he gets? One day I took his hand and followed his lead. Down the sidewalk to street where you would turn left to continue on to the school, he stops, crawls over to the sign, pulls up on the sign and pretty much looks like the happiest kid I've ever seen. Glowing happy. Pure joy happy. He looks at one side, then the other, amazed that it says the same thing on both sides. So be it. We make trips down to the sign every few days now. Sometimes just he and I, sometimes with the therapist, sometimes the whole family. This gives a whole new meaning to "I wonder what the neighbors will think."

Isn't it all about expectations? I would expect Louie would want to go to the playground. I would not expect Louie to fall in love with a one way sign. Or that he would love microwaves or mailboxes. Most kids love playgrounds. Mine just happens to love street signs.

This I Believe

2008-04-30T19:49:00.005-05:00

I recently submitted this essay to NPR's This I Believe. It's a really cool project and I enjoy reading all the essays. They archive every one they receive on their website. Mine should be posted in a couple of months. If you have read my blog you will see I've repeated many of the same things, this time just all put together in a way that tells what I believe. It's a good question to ask ourselves. Which is probably why Edward R. Murrow started this project in the first place. Sometimes it seems we don't even know what we believe until we're forced to examine it in the light. So here's my belief all opened up and under the light:

I am haunted by a photograph. It's a picture of me in the nursery standing proudly beside the crib we had just put together that day. Fourteen months after our son was born, he was diagnosed with Williams syndrome. The girl standing in that nursery is now gone. I wish I could go back to that moment and gather her in my arms, that ghost of myself, and warn her that her heart would soon be broken into a billion pieces. I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive.

Louie will be three in June. He doesn't yet walk or talk. The parents of children with special needs live in a constant paradox between realism and hope. I have let go of many of the expectations parents typically have for their children. As I drive by soccer fields on a Saturday morning, families scattered about with folding chairs and coolers, I realize yet again, that probably won't be us. I have accepted that we won't go car shopping on Louie's sixteenth birthday. Maybe it's a defense mechanism triggered when one cares for a child with special needs. It seems negative to those on the outside, but to me, it's my suit of armor. And I need it for the battles I fight as I advocate for my son and of course, the battles I fight within.

This tiny child, with starry blue eyes and a lopsided smile, looks to me to meet his every need. Many times, it's a guess. And other times, it's what I believe he needs, what he undeniably deserves. My voice does not waver when I let people know that when they use the word 'retard' as another word for 'stupid', what they are really doing is insulting an entire group of people - those with the medical diagnosis of mental retardation who simply cannot organize themselves and fight this offensive use of the word.

Now I sit confidently at the head of a conference table during school meetings. I ask the hard questions. I require accountability and endure the awkward silences of confrontation. I document things. I follow up. I learn special education law and memorize Louie's rights. I am an advocate for someone who deserves an education, to have a chance at independence and above all, to live a valued life.

I've come to realize that there will always be those moments when I revisit the hurt. Graciously, the pain subsides and I am reminded of who I am. I am Louie's mother. His voice. His advocate. This I believe. More than anything, this I believe.

Lately

2008-04-22T21:17:00.010-05:00

We visited Dr. Mervis in Louisville weekend before last. It wasn't a terribly positive visit. She said Louie is not typical of someone with Williams syndrome and that he is lower-functioning than most. This information makes us flash forward and the future is not usually a place you want to go when you have a child with special needs. Nothing has kept me more grounded in the present, which is a good thing so I hear. But still, after the meeting, the unknown seems a little more unknown, the dark a little darker, the reality a little bleaker. I try shaking it off and remembering that I will feel the same way about Louie when he's sixteen as I do now. Even if he's not talking. Even if he never says a word. I will still love him then as I do today.

I've been struggling with a lot of guilt lately. Guilt that my blog is almost entirely about Louie and special needs parenting. What about Ace? Because he is perfectly developing, a pure joy and the most contented little fellow around does that mean he doesn't deserve the same thought, the same encouragement and patience? Yes, he does! He deserves a million blogs over! But the fact is that Louie needs more attention and probably always will. I can't imagine what it must be like to have a sibling with special needs. I am certain it has potential to be a tough place.

I just read somewhere that a child with special needs never has to compete for his parents' attention. He just automatically gets it. It's true. Ace hasn't had near the amount of attention and encouragement Louie has. Even when Ace reaches a milestone, it somehow comes back around to Louie. I guess because I can see the way it's supposed to be. Everything people told me a baby would do, Ace does; a constant reminder that Louie didn't. But I do enjoy it. I really do, sometimes, guiltily, I enjoy it more than anything.

Last week Louie's therapist sent us some cell phone video footage of him walking. He won't walk for us at home but in that video he is cruising along like it's nothing! Looking around, giving high fives, struttin' down the hallway. That stinker.

Ace started crawling last week, a milestone slightly overshadowed by Louie's Shaking His Bon-Bon video. How many times did I hiss at Chris while he was on the phone talking to people calling about the walking video, "Hey, hey, Chris, tell them Ace is crawling.", "Pssst...tell them about Ace."? Sounds annoying, huh? I'm sure it was.

Beyond the special needs aspect of that scenario, there is another element at play; and that is a mother's never-ending pursuit of fairness, whether the child is typical, has special needs, twins, whatever, we want to be fair, equal, 50/50. Some moms can drive themselves a little nuts over this. Using Chris' mom as an example, "Now, I got Blake a pair of socks so to make it even I got you this shirt and then I got you another tool so then I had to get Blake this flashlight." You can only imagine how long it takes to open Christmas presents. A long time. A very, very long time, bless her equally-loving little heart.

Dr. Mervis commented that she could tell, based on Ace's personality, that he would choose to be a support for Louie, that he would want to be a part of Louie's life. Our pediatrician said that Ace would have the benefit of growing up with a certain sensitivity and compassion. But while these attributes are important, my greatest hope is that Louie and Ace develop a bond. Maybe not your typical brother bond, but something, some semblance of a connectedness only felt for each other. Right now Ace is Louie's shadow. He follows him around, sometimes just to touch him. It's sweet but I wish Louie would acknowledge him. Or even just look at him.

We've only had this diagnosis for a year and a half. I realize I am probably still grieving. I am not yet the veteran special needs parent that I know I will be someday. I know I will adjust and maybe even find something else to write about one day. But for now, my posts always seem to dig a little into the hurt of it all and then bounce back with some twist that spins it into a light that is more bearable, more humorous or more loving. I have to do that. Otherwise, I might lose myself in the why, why, why of it all.

Echoes, Friends and Bravery

2008-04-17T14:37:00.023-05:00

It's been one of those weeks. The echo came back normal. We are relieved for now - until the next one. Louie did fairly well...we made fools of ourselves singing "Old MacDonald", blaring Elmo on the DVD and putting a spinney, flashy light thing in his face the whole time. The endocrinologist was a different story. Louie's veins are tiny which makes drawing blood excruciatingly difficult. His cry said clearly "You are my parents and I can't believe you are letting three nurses hold me down and stick needles into my arms. For crying out loud, how could you?" I have never heard such distress in his voice. I felt sick to my stomach. What a pitiful sight on the way home - in his car seat, his hair all matted with tears, and his Winnie the Pooh "I Pitched a Fit" sticker haphazardly stuck to his shirt.

I told my friend about this string of doctor appointments and she commented that she could never do it and that I was brave. But I'm not. I'm not brave at all. We just deal with what we have to deal with. It's hard to know what to say to someone when you ask how their week went and the person goes on and on about violent blood work episodes and echo cardiogram reports. Seriously, what do you say to that? "Ummm...I'm sorry? That sounds crappy?" And what she said was perfect but the thing is, she has twins. I think she's pretty brave herself. I can't imagine what it must be like for her. Just as she can't imagine what it's like for me. But we try. We try our very best to put ourselves on the other side, to relate, to say the right words at the right times. But when it comes down to it, I think the most important thing friends do for one another is to press their ear against the phone (or in my case, iPhone - sorry I just had to say it. I freaking love that phone!) that is balanced on a shoulder, trying to feed one child while the other runs around the house completely naked because she has learned how to take her clothes (and diaper) off. It's amazing how much time goes by without seeing or sometimes even talking to our friends and it further amazes me that they are still there when you come up for a breath on the other side. I love that. I love knowing they are there and they understand when I might be swimming underwater for a while.

To live in this world, we all have to be a little brave. For those moments we turn a corner and boom, there's that stomach-sinker when we learn we didn't get the job. And we thought it was the perfect job. When our children are sick and one is throwing up on you while the other's diaper leaks all over the place and you're eight months pregnant and you have 20 emails to return and 4 estimates to complete before work tomorrow. There are those bring-you-to-your-knees devastating moments, when we discover we've had a miscarriage or a parent has been diagnosed with Alzheimer's or when you learn your child has Williams syndrome. And all the while, we try to be strong. We have to be. There simply is no other choice. And fortunately we have these friendships, whether new or old, far away or close, blogger friends or best friends, who help us get through it. And remind us that we are brave.

Matters of the Heart

2008-04-11T21:23:00.001-05:00

Chris has been out of town for work this week so the conversation around here has been, well, little to none in terms of the real back and forth meaningful type. It was more like this: "Louie, do you want milk?" I ask. "Eeeeeeeeee!" he responds. Ace shrieks in the background. Or there's me trying to be the language modeler "Let's get undressed. Bath time. Shoes, OFF! Socks, OFF! Shirt, OFF! Pants, OFF! Diaper, OFF! Ok, now what do you want?" "Eeeeeeeee!" he responds again. "You you want in! You want INNNNNNNN the tub!" I shout back and plop him INNNNNNN the bath. By the third day I'm so sick of hearing myself that I give in to the if-you-can't-beat-them-join-them type of thinking and my communication dissolves into grunting, babbling, shrieking and crying.

I've also spent the week trying to figure out everything around Louie's ear tube surgery originally scheduled for Monday of next week. It has been documented that there can be complications in kids with Williams syndrome and anesthesia, specifically those with heart issues. When the anesthesia nurse called yesterday, I told her about Williams syndrome and the WS website "for doctors" section which discusses the risks and recommendations. We hung up with the plan that she would give the information to the anesthesiologist and call me back. When she called back today she told me that Louie's cardiologist would not sign off for the surgery until he had an echo cardiogram since he hasn't had one in the past year. So now we're trying to schedule the echo.

I'm glad we are taking this precaution. But of course I'm somewhat shaken. I have already been preparing myself for the echo he is scheduled to have in October of this year; I have almost talked myself into looking forward to it since it could be the one that puts Louie in the clear, as far as heart problems go. If he hasn't developed any issues by then, it is doubtful he will. And I guess the echo we have in the coming weeks could tell us the same wonderful news. But I haven't been preparing for this one. It came seemingly out of nowhere and smacked me in the face with the weight of an incomprehensible world where babies have heart surgeries.

Louie's first and only echo took place a few days following the diagnosis. I knew little about what I was facing, what to expect, what Williams syndrome even was. I took Louie from appointment to appointment to check his heart, kidneys, blood pressure, eyes, ears, all in a daze of confusion, electrifying shock and a strange and unfamiliar relief (to finally have a diagnosis). I didn't know how high the statistic was for heart problems. I didn't even know to be afraid.

The heart scares me sometimes, I suppose because I don't completely understand it; I can't get my mind around the sheer beauty and science and how it all comes together and works to sustain life. There have been times when resting my head on Chris' chest and I hear those rhythmic contractions, ba boom, ba boom, ba boom...I decide I can't listen anymore, the thought becomes too big, the sound too fragile. Like when you're little and trying to understand the concept of forever, and ever and ever and ever and ever...it makes you dizzy.

This involuntary muscle that pounds our blood in and out of all the places its supposed to be is also the place we think love comes from; though in reality we all know the heart really has nothing to do with the emotion, the feeling, of love. Love is concocted in our brain. But the heart is much prettier, a much more poetic organ, a much nicer place for love to live. So we conclude, Heart = Love. And I conclude: Love = Heart. Heart = Louie. Louie = Love. Be well, my love, my Louie, my heart.

I'm so relieved Chris is home. For many reasons. Tonight the house is still but the winds are strong. The boys are sleeping hard. It's late and we're about to go to bed. I hear the clocks ticking, a dog barking a few streets over and the occasional creak of the house settling into night. And while I can't hear them, I know there are four hearts under this roof drumming out a beat of love. Ba boom. Ba boom. Ba boom. Goodnight. A good night, indeed.

This Little Ace of Mine

2008-04-10T19:49:00.000-05:00

I'm gonna let him shine, let him shine, let him shine!

These Ankle-Foot Orthosises are Made for Walking

2008-04-04T09:38:00.024-05:00

Louie took his first independent steps yesterday. It was in physical therapy and it was all for the mailbox. I can't quit you mailbox! Anyway, the therapist said not only did he take steps, he did it four or five times and went the distance of 20 feet or so. I was only able to get him to take a few steps at home, no 20-foot stretches, but still, he did it! Definitely awkward, he holds his left hand up in the air as though he is still holding someone's hand and with each step you think he's going to fall.

Walking has been one of the big ones for me. One of the delays that has brought the most sadness. If I stop and think about it, I realize this is probably my sadness, not Louie's. He doesn't know what he's missing out on. But I do. The park, the playground at school, outdoor birthday parties with water games. Of course, he can go to all of these but he can't really play, let go, be a kid. Last summer on vacation we were down at the hotel's lovely pool...there were fountains to to play in; children shrieking and splashing through the water, little chubby one-year-olds walking about. And there sat Louie in his tropical fish sun hat and swim diaper at the edge of the pool. It was one of those startling moments that, ironically, sitting 100 yards from the beach I felt as though I were 10,000 feet above sea level. An altitude where the air felt thin and I couldn't catch my breath. We told the waitress to make our food to go and I let the moment get the best of me as I cried behind my sunglasses. It was startling because I thought I was beyond all of that; all of those comparisons to typical kids, all of that grief about the child I thought I was going to have but who turned out to be someone completely different. Now I've come to realize that there will always be those moments where I revisit the hurt. Knock, knock, it's me again. Can you please mend my broken heart?

The parents of children with special needs walk a fine line between realism and hope. I've given up the soccer games, the idea of Louie driving and on many of the expectations parents usually have of their children. Often people say, "Well, you don't know...he might play soccer. You're being so negative!" It does seem that way, doesn't it? And they may be right. He could very well play soccer. But that's what I mean about the paradox between hope and real life. Maybe it's just some defense mechanism triggered when one parents a child with special needs. It seems negative to those on the outside, but to us, it's our suit of armor. And we need it for all the battles we fight as we advocate for our children and of course, the battles we fight within.

Our pediatrician's daughter passed away from complications of Rett syndrome. He recently said that one of the many things he misses about his daughter is how she made them a better family - a little more empathetic, a little more caring and sensitive and a lot more compassionate. I've heard it said that life does indeed break us at times, but when we heal, we heal stronger where the break occurred. I find comfort in that.

When the therapist called yesterday to say "Oh by the way, your son can walk" I had a hard time holding it together. Sitting in my car, in the grocery store parking lot, I fell apart, fell piece by piece into the sweetest joy and it felt so good. While it never doesn't hurt, I believe it is we, the parents, who carry this burden of pain because our expectations won't be fulfilled. But, the kids, while they sometimes have to endure physical pain and health issues, I believe they are happy. Happy to push buttons on the microwave, to spin a wheel, to hear their favorite song. Happy to be alive.

Your joy is your sorrow unmasked...
The deeper that sorrow carves into your being,
the more joy you can contain.
- Kahlil Gibran

Louie, keep on walking. Whatever your reason may be...the mailbox, the vacuum; it doesn't matter. Because you've got parties to attend, playgrounds to play on, slides to go down and fountains to jump in. The miles lie before you and the road is yours to walk. Stand tall, my boy.

Save the Lasagna

2008-04-01T14:45:00.009-05:00

I drove through a parking lot yesterday with a lasagna on top of my car. A man walks out of a store and waves his arms back and forth above his head while looking straight at me. I think, "What's with this crazy man? Why is he waving like that at me? Is he looking at me? Do I know him? No, no I don't know him." Then, he points and gestures to his own imaginary top of the car with his own imaginary lasagna.

This is not my first absentminded mistake involving vehicles. There's the time I unlocked my car only to proceed to lose my keys. Traffic lines up behind the car waiting for my parking spot. Oh, but before I realize my keys are missing, I can't find my cell phone which turns up conveniently behind the back right tire (as pointed out by the passenger in the car waiting for my spot). Back in the car, seat belt on, no keys. Back out of the car. Open the trunk. Look through bags. Open all four doors. Decide to no longer make eye contact with the people in the waiting car. Find keys. Quickly drive away. Another good one in recent memory is the backing over of the oh so well-researched double stroller. Diaper bag, keys, kids secure in carseats, reverse, crunch. For good measure, I put the car in drive and run over it again. This crazy, blissful, losing-my-mind life.

I say to Louie tonight, "Time for bed. Let's go upstairs." He crawls towards the stairs or more like hops, sort of like a frog, because he has something in his hand. He wants me to put whatever item he's picked out 4 or 5 steps up and when he reaches it, I am supposed to move it up again, out of reach. This is his new thing. I suspect he picked it up in physical therapy when he was learning to climb stairs. The therapist had to provide a toy incentive to get him to continue climbing. I am almost positive that he thinks that's simply how one climbs stairs. Tonight he chooses a small plastic ball. Ace is on my hip. We begin our journey, literally one very slow step at a time. Chris calls. I answer. I move the ball 3 steps up. It rolls down. Note to future self, a ball is not a good option when one needs it to stay put on a wooden step.

Chris (on his commute home with the dialies): So, I just had this moment, this huge reality check.
Me (Phone balanced on one shoulder, Ace blows raspberry in my other ear, ball bounces down one step, I put it up 4 steps): What's that?
Chris: I'm going to be 35 soon which is only 10 years away from 45.
Me (Ace is trying to wiggle out of my arms, move the ball up 4 steps): That's true. Crazy, huh?
Chris: I'm shocked. It just hit me. Maybe I should buy a convertible. Or a new boat? Kidding, kidding...
Me (Realizing he was just chatty and this could go on and on and that he probably doesn't know I'm in the middle of a stair climbing event): Boat? Good idea! Ok, see you in a few. Stairs, balls, babies, bedtime, gotta go!

Sometimes the best conversations we have are by phone. If we happen to catch each other at a time when we're both captive such as driving, waiting, well, mostly driving. Because sadly by the time Chris gets home, we make and eat dinner (we once made a noble attempt at eating together at the table but ended up being lured in to the cozy American tradition of eating by TV-light instead), clean up the kitchen and then crash out with our bodies in this somewhat-sweet-somewhat-strange contortion we get in so we can share the couch. I scratch his head. He tickles my feet. And most every night this is what we do. While the list sits on the desk. And all the plans I had for "after the kids are in bed" are shoved into the corners of my procrastinating mind. The light of the television dances around the room . My boys are sleeping, Idol is on, my lasagna is safe and all is right in the world.

Size 1

2008-03-28T21:36:00.016-05:00

In a small burst of energy last night I went into a bit of an organizing tizzy. Hang up jackets. Open mail. Clean out diaper bag. Hidden at the bottom of the bag, among the wadded tissue and gum wrappers, beneath the orange sippy cup, I uncover a sweet relic, a Huggies diaper, size 1. I stopped and indulged myself in a moment of melancholy. I know I'm going to have these moments over and over again as my boys navigate their way through childhood, leaving yesterday's playthings behind. That size 1 diaper, so tiny, no bigger than the size of my hand. Two sizes and five fat rolls later, my newborn is no longer a newborn. I often get this same wistful feeling when I see pictures of them and wish I could go back to that moment and hold them again and pray I held them enough.

How many times have you heard "They grow up so fast"? Now we know, don't we? We're a part of the "enjoy this time while they're young" club. Oh how we know. Kids mark the passage of time with a big, fat metaphorical Sharpie. I can't think of much else that displays time in quite such a marked fashion.

Today, in keeping with that state of mind, I decided to go ahead and do the dreaded kids' clothes season switch. I sat in the middle of the room surrounded by piles of clothes...new season, old season, Goodwill, Louie's to be passed on to Ace, and then the ones Ace has outgrown. Lump in my throat.

The night feedings are gone. Of course, I'm pleased to be getting full nights of sleep again, but there is a tiny (I said tiny) part of me that will miss those moments when the house is dark and silent, after I feed him and he lies heavy and limp in my arms. Nuzzled into my neck, his soft breath rhythmic and warm.

I am awestruck by the ability these little ones have to reduce us to fragile skeletons of our former selves. It's a vulnerability like no other. Stripped clean and heart in our hands, we offer it to them. And say, "Take it...it's yours. All yours."

Peanut Butter and Honey. To Eat or Not to Eat?

2008-03-26T13:40:00.003-05:00

Labor and delivery - $7,500.
Nursing bra - $20
Worry and Guilt - FREE

We all know it. We all feel it. And none of us know how to get rid of it. We worry about many things when it comes to our kids. One of my worries is that my boys are cold at night. Another mommy friend worries hers are hot. We worry that they're thirsty, hungry, unstimulated, watching too much TV, that they are not getting enough "socialization", not enough time outside, too much time inside, you haven't read to them enough and to top it all off their sheets are dirty.

Food is a hot button for most. My friend's twin girls have never had peanut butter because she swears somewhere along the way someone told her they can't have peanut butter until age 3. Even at their last appointment her pediatrician mentioned something about a peanut butter and jelly sandwich. But she's sure that the doctor must have been mistaken. She's got the same notion about honey. To the point where she's got her husband so paranoid that he shouts "Clear the room! I've dropped some Honeycombs! I repeat, alert, alert, Honeycombs are on the floor!" (as in the Honeycomb cereal). Maybe it's true. Maybe they shouldn't have peanut butter or honey until they're 5! And that's another reason why we worry...because for most things when it comes to kids, you hear a zillion different opinions.

You hear it all the time. "All he ate yesterday was Goldfish" or "She used to love broccoli but now just the smell makes her gag." Pretty much every conversation I have with another mommy includes at least a ten minute discussion about our kids' latest eating habits. What they're eating and how much, what they're not eating, what we may try feeding them, what we wish they'd eat, how they're eating...with a spoon or finger foods, what their favorite food is and so on. I think the reason it gets to us on so many levels is because ultimately we believe this should be the simplest of motherly duties. We give our children food to sustain life. Simple. Or so we think. But really, it's not simple. It's not simple at all.

This begins way before solids as you take your little one to their first well-check and you are quizzed by the nurse dutifully documenting all your answers. And in your postpartum haze you start feeling like the questions are accusations, "So, did he nurse on both sides? How long did he nurse? How many times? How many wet diapers? How many dirty diapers? Did he spit up? Did he seem satisfied?" Stop the madness, you think! I can't take it any more! Maybe I am a bad, bad mommy!

And what if your child is not measuring up on the percentile chart? The ole' percentiles. How we struggled with those with Louie. Not only do we need our children to eat the right foods in the right quanities at the right times, we then need them to measure up to all the other kids the same age. No wonder we're stressed about it. It's a long running worry, though. Maybe we can take comfort in knowing that it's something innate in all mothers, this worry, this guilt... our grandmothers worried about it and probably their grandmothers too. Of course the worrying does no good. The kids will eat what they want to eat. And in the meantime, we'll continue to talk about it, worry about it and stick another couple of chicken nuggets in the microwave. We're moms. That's what we do.

"Retarded": A Medical Diagnosis

2008-03-22T11:12:00.014-05:00

Isaiah Washington was more or less fired because of his anti-gay remark on the set of Grey's anatomy. Michael Richards of Seinfeld fame will forever be known for his racial attack on African-Americans during one of his comedic performances. Mel Gibson goes to rehab for anti-Semitic slurs. Every news outlet in America and around the world reported these incidents. We live in a world where being "politically correct" is not just an expectation, it is a rule and it is what's right. The Jewish community, African-Americans, gays and other groups have organized themselves and fought a long and difficult social war to free themselves of hurtful labels and prejudice.

So, I have to ask, why do we still use the word "retard" as negative slang, as a word to hurt someone, to call them out as stupid or to describe ourselves when we've done something forgetful or absent-minded? What many don't understand is that the word "retarded" is a real word used to psychologically describe someone with an IQ of less than 70. It's a real diagnosis. It's not some pretend word like "dufus" made up to insult another person.

I don't choose that label for my son. But he is on the medical waiver list with the Department of Mental Retardation. His diagnosis states that he may have "mental retardation". His IEP documents that he has "mental retardation." In these instances, again, while it's not the word I would choose, the word is being used appropriately. And it's being used to describe my sweet boy.

When I hear people use the word in ways that are inappropriate, and believe me, it's quite a bit, it stings a little. But the thing is, I am sure I said it too, before I had the pleasure of loving someone like Louie. And therein lies the problem. We don't become aware of this word and its sometimes painful associations until we find ourselves close to someone labeled "mentally retarded".

It shouldn't surprise us that the word is used as frequently as it is and by people from old to young. Because the people who are labeled as "retarded" aren't going to bring it up. They're not going to say "hey, that actually is my medical diagnosis and it hurts when you use it that way."

So, let's start spreading the word and increase awareness. Soeren Palumbo gets it (beautifully). And so does Katie Couric. We need to do this for ourselves and for the ones that have this diagnosis. We should stop feeling angry and victimized when someone says it. And stop casting the shadow of judgment upon them when they probably mean no harm. And start teaching... show society that it is not acceptable and explain the reason why.

What everyone must understand is that we're talking about a group of people, society calls the "mentally retarded", who cannot, who simply do not have the skills to organize themselves into groups to fight for what is right. In fact, it is this particular group of people who will never harm another person, never insult another person, but who will know simply how to love (maybe not the display of love we typically expect but love nevertheless). It is our social responsibility to help those who cannot help themselves. This is not their fight to fight. Because they can't. It's ours; so let us begin today...

Columbus and the Constant

2008-03-18T17:55:00.019-05:00

We're all crowded around the computer. I am typing...and feeling guilty about the heaping pile of laundry in the other room waiting to be folded. Louie is playing with a strand of pearls (clearly, fake). A good example of irresponsible parenting...they're probably coated with some chemical and I'm absolutely sure they are a choking hazard. Better get those pearls. Meanwhile, Ace is gripping the mirror on his excersaucer tightly with both hands, face pressed against it like a preteen practicing kissing. Not yet. Please, not yet!

Anyways, I can't wait to report on all the clever things they say when they start talking but for now I can only guess as to what their thoughts might be. Completely subject to my interpretation: Ace, our resident discoverer...the Columbus of the home front, "So this is a spatula? Ahhhh...perfect for beating against this shape sorter." or "Are you kidding? I love this mattelaise bedspread! It feels so good when I open and close my hands fast against it." The world is a wonder. And a wonder for me to watch him.

Ace is a brave little man - prepare to be awed - he silent cries. Yes, you heard me right, a cry with no volume. At one of Lucas' class parties Ace was sitting quietly in his car seat carrier while Chris took pictures and I assisted Louie in gluing cotton balls to a paper plate...or maybe the glue was on a paper plate. I can't remember. I think we were making a snowman. One of the other parents came over to let me know my baby looked upset. And there he was, silent crying, tears running down his face, bottom lip stuck out, his distress indicator (stork mark on forehead in between eyes that turns red when distraught) bright with color, but no sound. Not a even a whimper.

Ace is developing right along. He knows how to bang two blocks together, take off his socks, babble the 'm' consonant and is getting up on hands and knees. He's reaching well out of mid-line and developing his pincer grasp quite nicely. Check, check and check on my child development mental check list. In this family, in my house, in my mind, this is completely normal. The reality check was talking to my mother-in-law on the phone last night..."you wouldn't believe what Ace did today! He took two blocks, and he banged one against the other...". She really tried hard to share in my enthusiasm but I could see through her pretend excitement. And that's okay. Not everyone has been in the early intervention system for over two years. Along the way we've picked up our share of how this whole child development thing should go. This awareness is almost second nature at this point. Doesn't everyone celebrate the development of their child's pincer grasp?

Louie is our constant. We can count on him to wake up at 7am, to drink his milk, to request his ball toy, and to fast-crawl into the kitchen whenever he hears the microwave with hopes one of us will lift him up and let him push the buttons. He loves digital lettering and numbers on anything...clocks, signs, the DVR on pause (it shows the number of minutes it's been on pause on the screen) and he loves pushing buttons on electronic devices such as cell phones, DVD players, printers and so on. Therefore, isn't it obvious that the microwave should deserve the fast-crawl since it has all aforementioned beloved items in one smart white machine? "What? Have they started that silly food machine without my help? Wait, wait! Here I am! Lift me up! I'll help you!" Thank you, Louie. Because we need your help. Truly, we do.

Louie's development is slow. It is. But, one thing Chris and I have definitely learned is to celebrate each and every new development, major milestone or not. Which is probably another reason we are so in tune with Ace's development, big things and small. No matter who is doing it, it is reason to shout with joy and jump up and down. There will never be a word, a step, a letter written, an art project completed that won't be a big deal around here.

In the meantime, until they can actually verbalize their affection, we'll take their sweet gestures - those sloppy (and I mean sloppy) wet kisses from Louie and Ace's arm-flapping, leg-kicking excitement when we go to pick him up - as the expression of love every parent craves from their children.

Who knew I had so much to say? Who knew?

I Will Survive. Right?

2008-03-16T21:17:00.006-05:00

Can someone come over here and scrape me off the floor please? Seems like I'm just surviving these days, doing what is required to live. Make coffee. Feed children. Change diaper. Get dressed. Feed children. Change diaper. Drive through Starbucks. Feed children. So, you see the routine. There is no "pay bills", no "fold laundry", no "wash hair". Well, that's a lie. I haven't stopped showering. Completely. It's an every other day thing. Mostly. What's the deal? How can two tiny people be beating me? I'm the one in control here, right? And the sad, sad thing is that they're really good. They seldom cry. Ace is not completely mobile yet so it's not like I'm chasing him all over the place. Louie doesn't get into too much. But they are definitely beating me on the energy game.

I'm beginning to worry something is wrong. Can Jenny ever get her groove back? Can Jenny even remember a day when the word 'groove' could actually be applied to some part of her life? I have had the luxury of two extra long naps this weekend and as I sit here Sunday night looking at my calendar I wonder how I'll do it. Not to mention the list of extras that I keep putting off - make hotel reservations, birthday gift for friend, set up college-savings plan. You know, that list.

Most rantings such as these wind down by saying how it's all worth it. Well, I'm not going to disappoint. Because I agree. It's all worth it. When two boys, one with starry blue eyes and one with Pete Rose hair look at you like you made the sunshine and the rain, well then yeah, it's worth it.

The Question I Couldn't Answer. Until Now.

2008-03-12T13:37:00.006-05:00

Last week one of Louie's language therapists asked me a question that stopped me in my tracks. She asked who I thought Louie was taking after - me or my husband. I stammered around and finally told her I couldn't answer the question. I couldn't answer it because I, his own mother, have been viewing him through the lens of his disability which is exactly what we ask the rest of the world not to do. I have been judging him and attributing everything about him, his appearance, his personality, his habits, all around this label of Williams syndrome.

I emailed the therapist to let her know what an impact her question had on me and suggested she ask this question of all the families she works with. She has a brother with Down syndrome and this was her response:

"I used to think of my brother in the same way. Carter looks like a kid with Down syndrome. It wasn't until the past few years that I started noticing the similarities between him and the "rest of us". It was kind of cool. I had the exact same realization you did. It was kind of an ah-ha moment when I realized he was made up of so much more than a kid with Down syndrome. He's the son of a shy farm girl from NC and a Type A retired marine. He has fair skin like my mom, a hairy back like my dad, and an affinity for sweets like me! Each year I can see more and more of my parents' and my personalities and physical features in him. Anyways, I'm rambling. Just something fun and valuable to think about."

And how right she is. It is a very valuable thought. It brings tears to my eyes. Knowing that I, the person who is supposed to be completely tuned in and sensitive to Louie, has judged him in the worst of ways. The nice thing is that beginning today, I can change that. I can see that he got his beautiful crazy blond hair from his father. And his love of books from his mother. And his sensitivity to others from his great-grandfather. Louie is not just a genetic anomaly. He too has a heritage and we must honor that. Starting with me.

Hub Loses Blog Privileges

2008-03-12T13:16:00.006-05:00

You may not have noticed, but I'll take it upon myself to point this out...if you read my previous blog entry yesterday you will have read a much different post than what is there today. The hubster was quite hurt over this post. He said "For those that don't know me, how will they know what a heckuva guy I am?". He moped around last night complaining about what a jerk it made him out to be. So, this morning, the kind and loving wife that I am, I asked him if he would like me to delete the entry. He said yes, he would really like that. So, I decided to edit it and take out most of the things that shed him in a less than flattering light and include a picture of him being an involved daddy. Which in essence ruined my whole point. Jeez, I didn't know he would get so upset and take things so literally. Beginning today, he has lost all blog reading privileges.

Blog You! No, Blog You!

2008-03-11T15:21:00.007-05:00

We've all complained about this at some time or another, except those of you with annoyingly perfect husbands (Summer C.). It's the age old who does more, who works harder, when will I get a break argument that couples with kids have. Hub recently commented one morning "When do I get a morning?" (meaning to sleep in, I guess?!).
Me: Ummm...we have kids, we have to take care of them (yes, this is sarcasm).
Hub: I always get up with Louie.
Me: Well, I always get up with Ace, and sometimes in the middle of the night. When do I get a morning or what about a night for that matter, a night not to feed them dinner, not to have to bathe them and put them to bed? That's it! I'm blogging about you! (I jump out of bed and slam the door).

He does work hard and he is a great husband and father and we do appreciate all that he does. It's all true. He's a gem. I'll try to keep that in mind when he's on the lake fishing this weekend and I'm wiping spit up off my second clean shirt and changing the 6th poopy diaper of the day. Just kidding...he'll be home with us changing the diapers, fixing lunches and everything else. I'm led to believe that this is the physically difficult stage of parenting...the infant and toddler days. Later, it will be more emotionally and mentally challenging, or so I'm told. I guess that makes me feel better. But at times it makes us all a little crazy.

The Nilla Wafer Diaries

2008-02-29T20:38:00.017-06:00

Ace turns 7 months today. A delightfully chubby baby with big apple cheeks which I so love to smother in kisses every day. Let's reminisce over the last month, shall we? It was all going so well. He was sleeping peacefully, awaking only once to nurse and then going straight back to sleep. We started solids and he enjoyed a wide array of foods...squash, peas, carrots, sweet potato, pears, peaches, rice cereal. I was amazed at his sophisticated palate, his complete pleasure in eating. He actually chewed the baby food like he was eating a tender fillet and cooed happy little sounds all the while.

Then he got sick...his first sickness. I thought this was the perfect photo to show how pitiful he was. That's a cool washcloth on his head, in case you can't tell. Anyway, I've heard a baby starts to lose the immunities gained from nursing at around 6 months and after experiencing all of this, I have to believe it's true. Night after night I ran up and down the stairs comforting, nursing, putting the binky back in, re-swaddling, until finally I surrendered and started sleeping in the bed next to his crib. Dare I admit I still swaddle him (I guess I already did) and he won't sleep without wearing the Velcro-closure, fleece straitjacket? Now he's strong enough to bust out, but like a prisoner finally set free, he can't make it on the outside and wants to return to what he knows. Swinging his free arms madly he starts his "Hey Mommy-lady, this is serious and you better listen to me and get up here and put my arms back in this straitjacket and I mean now!" cry. Turns out that anything you start that has to do with baby's sleep usually become a habit and then a curse if you ever want to stop it, i.e. binky, swaddle, nightlight and so on, especially with babies like Ace. He is showing himself to be not quite as adaptable as I once thought.

After finally getting over the cold, he got an ear infection, got better for a few days and then ran a fever for about a week. And so now we find ourselves a month later and peas and rice cereal are the only foods he will eat. He purses his lips tightly shut if offered any other food, even something super yummy like banana plum with rice (yummy, right?). Also, the act of actually feeding him has become trying in itself. This high-chair charade started after all the sickness...bobbing all around, trying to chew on the table, pulling the food-covered bib up over his face, putting his hands in his mouth while full of food and then spreading it all over his clothes.

He is waking up about 5 times a night crying until he is either nursed or given his pacifier. His two daytime naps are 45 minutes each. So you can only imagine the mess of a child he becomes around dinnertime. And the mess of a mom I dissolve into. Sure, we will get back on track. I know this without a doubt. I understand this shall pass and that he will only be a baby once and all the enjoy the moment sentiments, but nevertheless, these are hair-pulling, running-on-empty, eat a whole box of Nilla wafers and pass out kind of days for this mama.

I Love my Mailbox

2008-02-27T13:02:00.013-06:00

It is common for people with Williams Syndrome to perseverate on certain favorite topics. Some examples I have heard about include sports, scary things and TV Guide. Weed eaters and vacuum cleaners can be favorites in the younger sect. Louie follows me around whenever I get out the Oreck. He has had one big obsession that actually interfered with everyday life. It was a plastic toy mailbox with a flower on top in his preschool classroom. He liked to bend the flower over, let go and watch it reflexively bounce back to an upright position. There was also a thing you could spin on the base; he enjoys spinning stuff too. The mailbox was the first thing he went to when we got to his classroom. He didn't want to stop playing with it for circle time or therapy. He quit napping. He didn't even want to go home with me when I went to pick him up. He wanted to be with his mailbox at all times, in all circumstances. His teacher said he looked longingly at it when she changed his diaper, like "oh mailbox, I can't wait to be close to you again." Louie's interests are limited and he is nonverbal but is not hard to recognize his happy places and interests.

The good news is that his receptive communication skills are far better than his expressive communication skills. He seems to understand many things we say. One gift we were given is that the first expressive language Louie understood and responded to was "Give me kisses". We ask for and receive many kisses every day.

Unfortunately for him, he seldom gets to do the things he would really like to do if left to his own devices...throw things, spin things, play with cause and effect toys (both appropriately and inappropriately), and eat rice cakes because he keeps a rather busy schedule with all of his therapies and interventions. And we try to engage him as much as possible. Anyway, I find these quirks and potential obsessions interesting and amusing. I have to. Otherwise I think it may break my heart.

I look forward to conversations with Louie on whatever his favorite topic may be. He will be three in June. Almost three years without a single word. Sometimes I sort of forget that he will speak actual words someday. The obvious is there is very little communication happening between us. We recently began using the picture communication system after realizing that sign language was not working. After trying to teach him signs for a year and a half with no real progress, we had to find a different route. The four signs he knows he uses indiscriminately and will do all of them together if he really wants something. Hub, Nana, myself...most people very close to Louie have had dreams where he talks and says random things like "Put that in the trashcan." I can tell he is just bursting at the seams to tell us what he wants, likes, questions. I wonder what his voice will sound like.

My Affair with D.V.R.

2008-02-25T13:47:00.004-06:00

I haven't loved anything as much since the invention of the Internet. DVR has allowed me to actually watch a program start to finish which was virtually impossible with a newborn, I quickly discovered. Louie would start an inconsolable crying fit about ten minutes into Lost. Sadly, the rage I felt for missing my favorite television show was both electric and embarrassing. So along came DVR and happy days. No more commercials, no more crying interruptions and the beautiful, beautiful ability to pause and/or rewind live TV. For someone with a mild hearing loss in one ear and two children, it's lovely to say the least. Some may view my love for DVR with pity and I get where they are coming from. However, Louie is 2 years and Ace is 6 months, so these are the days of parenting when you seldom get out at night and you really look forward to Lost or I admit, American Idol. The writer's strike really did me in but that's another story. So, I had a small tiff with my DVR last night. We recorded the Oscars so we could fast forward through the things like 'best make-up' and 'best animated short' or whatever. The Oscars were slated to run from 7:30 - 10:30 so that's what DVR recorded. DVR isn't quite smart enough to figure out that the Oscars always run over. Right after the best actor nominees were announced it cut off. Errggh, DVR, what were you thinking? Oh, you don't think, that's right. But so often it seems you do. Thank goodness for youtube which allowed me to see the eloquent Daniel Day Lewis accept his Oscar for best actor. DVR, I still love you and have come to recognize and accept your shortcomings. After all, you can't be everything and no one is perfect.

The Notebook

2008-02-20T20:23:00.016-06:00

You've heard it a million times...parenting is a thankless job. For those of us who feel words of affirmation are a necessity...those who grapple to find a compliment on a job well done, well, I guess parenting falls a bit flat in this area. No one is going to sit you down to tell you that you've done a good job diapering, meal planning, breastfeeding...but maybe you could use some work in the stain treatment arena and possibly a few pointers in play management...but you deserve a 10% raise. Yay you! Great job, congratulations, high-fives, way-to-goes! Nope. Okay, so certainly, somewhere there is a place I can really excel, maybe get someone to notice what a fine job I do. So I find myself making a notebook for Louie, who with special needs, comes complete with a bunch of paperwork. This is not any notebook. It's one of those 3" three-ring binders, I think they call it Super-Duty or something, anyway, it's nice. I have white dividers, and they have to be white, no colors thank you. And on the dividers, I have created labels on my handy-dandy label maker, "Medical Records", "IEPs", "PT evaluations", and on and on. I've organized the paperwork from earliest to latest by date. It's a beautiful, beautiful notebook. I take it to every meeting. I show it to people who do home visits. In one study we are a part of, I took my notebook so they could make copies of Louie's latest evaluations.
The graduate student responsible for making the copies commented "Wow, this is a really great notebook."
"Really?" I say, hopeful.
"Yes, one of the best I've seen in a while...a few years," she answers.
"A few years?" I ask gleefully. "Thank you, thank you so much!"

So there you have it. That, my friend, is desperation. Maybe it's just me, but I'm looking very, very hard for those small nuggets of positive reinforcement comparable to oxygen, to an overachiever, what-happened-to-my-6-month-review type such as myself.

Genetic Dice

2008-02-19T10:36:00.021-06:00

Samuel's mother, from the documentary Includ ing Samue l, talks about the thin line we walk between being a parent to a child with a disability and becoming his therapist. If we did everything the therapists and teachers recommended we would essentially become the child's therapist. I would prefer only being a mom but I also want to help Louie in whatever way I can. When raising a child with special needs, every day is filled with some form of at home therapy...the Wilbarger protocal sensory brushing, Nuk brushing, putting on his weighted vest in 40 minutes increments throughout the day, Floortime. Then there is putting on his braces, taking them off before nap, putting them back on after nap, trying to get him to walk with the walker and using the picture exchange system. The pictures are wonderful because they give Louie the opportunity to make a request by handing us the picture of what he wants. We keep everything, all toys, snacks, favorite books, everything, put away so he has to request each item. We encourage this constant interaction so he will see the benefit of communication which will in turn set the foundation for language. Let me emphasize, these are all the things we're supposed to be doing. We forget, we get discouraged, we get lazy. But in the end, when we see him accomplish the smallest of milestones, we celebrate. And it gives us the encouragement and the steam we need to step it up and keep going.

Our youngest, Ace, is typically developing but that is not without worry...at three months he rolled over but then stopped for about a week. Oh no! Regression! Autism? As with any parent, we are well-versed in worry. It comes with the job, hand-in-hand with guilt. Having a child is a leap of faith. As we consider having a third child we can't help but to ask ourselves if we should take the gamble and roll the genetic dice once more.

Paranoid Beginner Blogger

2008-02-18T22:36:00.005-06:00

I suppose it's time I join the world of blogging. It seems so narcissistic to think others might want to read about the tiny details of my life but it's the tiny details that make life, right? Maybe blogging, as high-tech and silly as it initially seems actually provides us with a tool in which to examine our lives, to give us a wide-angle view of the day-to-day, to help us more fully feel the human experience via a high-tech form of journaling. For privacy's sake, I've changed my kids' names. Internet predators, stay away! Call me paranoid.