A Vacation Worth Remembering.

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.

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

"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.

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.

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?

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.

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.

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.

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.

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.

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?

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.

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.

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?

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.

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.

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.