Friday, December 19, 2008

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.  

Tuesday, December 9, 2008


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.

Wednesday, December 3, 2008


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

Sunday, November 23, 2008

Halloween: A Velvet Pirate and The Dark Side.


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!  


Thursday, November 13, 2008

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.  

Wednesday, October 22, 2008


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.  

Saturday, October 11, 2008

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.  

Wednesday, September 17, 2008


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.  

Monday, September 8, 2008


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. 

Wednesday, September 3, 2008

It is Well - Kind of.

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 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

Wednesday, August 27, 2008

Hot-Wheeling in Holland or Wherever We Are.

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.  

Thursday, August 21, 2008

Vowels and Consonants

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.

Friday, August 1, 2008

My Dear Friends, I Thank You.

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.  

Tuesday, July 29, 2008

More Self-Indulgent Complaining and Some Funny Stuff Too.

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.