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.


Every minute counts.... said...

Boy, you have a way with words! You are not alone in you rthoughts. You have pretty much described my feelings lately, only much better than I could have done it. It is a constant every changing grieving process that never seems to have and end point. It just is constantly changing with new worries added to it.
I too would love for my child to be able to "fit" the typical WS profile, funny that is what I am wishing for anymore, not "normal" just a "fit" and not "one of the handful of WS kids that..."
Sending hugs your way,

camille said...

Will you please write a book? I'll buy a dozen copies and hand them out to everyone I know (ok I just realized that makes me sound like an isolated freak...only knowing 12 people...sigh, I digress).

I also feel like so much of Connor I attribute to WS instead of realizing, well this actually could just be his unique personality. For instance, yes, musicality is HUGE in WS, I know that. But my husband is also a musician and I too dappled in piano for a long time and happen to be one of those rare folks who has perfect pitch. Couldn't it just be that Connor has musical parents and therefore also enjoys music instead of WS assigning him that character trait? Sometimes it is just so hard to navigate the waters between what is WS and who Connor is.

Thanks for your posts and for sharing all the emotions you're feeling :) Will be praying for continued vowels and consonants from your little guy.

Julie said...

I feel and hear every word you are saying. I have recently come to the realization that the grieving process comes in waves and I will never truly get over the fact that my child has a syndrome. Yes, he is doing great all things considered and yes, after having open heart surgery I am just thankful he is still alive. That said I do wish he didn't have to struggle to meet every milestone that came so easily to all of my other children. You are not alone.

Gracey said...

I will buy several copies of your book as well. Here's a couple scriptures I thought of when reading this...
"Trust in the LORD with all your heart and lean not on your own understanding" (Proverbs 3:5)
"Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal" (Isaiah 26:4)

You seriously need a book...take care and let's get together sometime...beth

Amy said...

The thing that surprised me the most about camping on the beach was 1) the lack of good toilet spots, and 2) the ensuing sand embedded in every nook and cranny of your body. Nice words, Jenny. Thank you for being here in bloggerland, your words are heartfelt to read. U was sitting here today wondering if I make too big a deal out of how I feel about Avery and WS, and reading your blog today reminds me it is my pain and my grieving, dealing, and owning the pain, it doesn't much matter what others think about how I SHOULD feel.

Tara said...

Such a beautiful post. I still find myself grieving a lot. Many times for what you mentioned.....she's not fitting the mold of 'ws'. And, like you, we watch are youngest and think he is a GENIUS! Can't believe how quickly he learns things. Your post brought me to tears - it's so nice knowing I'm not the only one that feels the way I do.

Nancy said...

Amen. Thank you.

Penny said...

i don't think I have ever posted on your site before, but I am Penny, Keith's mom. Keith is 5 and also has WS and Autism You are only the 2nd mom I have "talked" to whose child has been dually diagnosed. It's very different. Sometimes you jsut don't know where the WS stops and the Autism starts and it can be awkward at times and sometimes our kids don't quite "fit" the WS profile.

I loved your post. Things have been rough in my world lately, but there are many many good days as well. Louie may progress slower that a WS child due to the Autism. Keith did and still does.

Just know your not alone,


The Pitchforths said...

As Brynnie would say, "Gimmie luvs". I have had several breakdowns in Brynlee's 4 year life, and I have discovered that it never gets easy. People say, "Yeah, but doesn't it get easier?" No, Hell NO it doesn't. It sucks! But I have also truly learned to celebrate the small things. Celebrate the mornings she lays in bed with me. The times in church when it's silent and she very loudly has to say, "Mama, I love you!" If you don't, someday they may not be here, and I cannot even go there, so wallow in those tantrums, give them the best that life has to offer, and truly celebrate every moment we have them!

Kelly said...

You are amazing at words. Hello I am Tylers mom. Your words are exactley how i feel. You are amazing and your son is lucky to have a great mom like you.

Laura said...

I soooo wish I could say you eventually stop grieving. I think that part of me grieves every single day. It's not a "stop me in my tracks" saddness, but it's there, because inevitably, there will be something that Michaela does or says that is different than a typical 9 year old.
I'm so thankful for all the bloggy friends who know what it feels like.

Ava Jewel Leilani said...

I just landed on your page somehow and have to tell you that I have felt so much what you wrote, which by the way was done so well, like Camille I would buy copies if you ever write a book! Thanks for being so honest with your post! Keepin you and yours in my thoughts.