Erik Quinn: The Heart of a Family: Waiting

Monday, April 16, 2007

Waiting

Well I never pray
But tonight I'm on my knees, yeah
I need to hear some sounds that recognize the pain in me


-- "Bittersweet Symphony" The Verve

I wish I was having a better day, but I'm not. I am unable to offer any apologies in this regard, as it seems beyond my control. It is reassuring that I have fewer unbearable days as time goes on, but they sneak up on me from behind like dark waves. These days remain unbearable, although there are very few tears on my face anymore.

Today I found myself obsessing over my son's skin. I obsessed about how it is missing an essential component and how he will likely look old before his time. I obsessed on his arteries threatening to narrow and harden without warning because of this same missing building block most human beings have and take for granted. I can only protect him from the outside and hope for the best on the inside of his little body. I made a mental note to call his cardiologist about his upcoming echocardiogram. Perhaps that will chase the nightmares away again. The darkness of the unknown is killing me once again. Is it just me, or is there a hell of a lot of the unknown when it comes to this syndrome? I don't even know how long my child will live. It seems I have read everything there is available and now I wait for another scientific discovery or a breakthrough in therapeutic treatment. I simply wait.

I actually sat down to watch the 60 Minutes video all over again and scrutinized how the skin looked on Williams adults. Overall, it was reassuring, but I did find it difficult to tell how old they are with the combination of pixie-like faces and geriatric-appearing skin that seems stretched tight over bone in some cases.

Have you ever had a nightmare that you looked in the mirror and all of your teeth began falling out? If you haven't, it's a common nightmare many people share. My nightmares are instead of sagging skin, twisting DNA, and prematurely gray hair on and within my son, who seems like a little old man already to me sometimes. He shuffles along and stumbles when anxious or distracted, bending halfway over at the waist to get a better look at things at times. He watches typical children play in groups, standing close to other adults on the outside of the circle instead of joining in, shaking at unexpected noises but now grown up enough to remain silent in most cases. He cries fewer tears now, too.

My heartache, although I have become numb to it most days, will be present at some level daily for the rest of my lifetime.

I hate that.

I know I'm not alone, but I know there are many readers out there who are in the same boat as I am -- no other WS children in their small towns. No other local mothers of young children to meet and talk to over coffee. Ah, yes -- the rare, elusive WS child. They might as well be freaking unicorns here. As far as I know, we're IT in terms of a young child with WS. You see, I would know by now.

It's morbid, but I wait for my phone to ring at some fateful moment in time as the next WS baby is born and diagnosed here. I am planning on crying my heart out for that mother and hating myself the next moment for being deliriously happy to hear her voice. I have heard her voice in my dreams many times already. I will be tempted to say, "I have been expecting you."

It seems like decades since Sophie was here to visit Erik. It's now a matter of days before we are reunited again with families with similar stories and I will have one special day when I no longer feel like I have to blaze my own damned trail. I would like to walk side by side with someone for just one day down this rugged path. Someone who knows exactly how I feel. Someone I can touch and see for myself. Someone with a child whose face looks an awful lot like my own child's. Just for one day.

That day is coming in two weeks.

7 Comments:

Blogger Lisa R said...

Boy you have been a busy lady!! The pictures are cute as always you all are doing cool stuff as always... Sorry you are having headachs I know they SUCK big time!!!! I hope they are gone or on the way out :)

So your having a bad day, that sucks!! He is a super cutie, don't look at the stuff that bothers you check out that awesome smile that can light up ANY room... love you Nance ;)

5:09 PM  
Blogger Kim, Grandma to Ava,ws said...

Awww, Nancy. I know it's hard and so unfair. For better or worse, our family has had much more experience with WS and we have access semi-locally to people who are dealing with the same thing.I guess I take that for granted.I wish I could pack up Laura and the baby and come visit you so you could see first hand that Erik isn't so different. Until then, continue to blog your little heart out. I love to read everything you have to offer. Hopefully it's as therapeutic for you to write it as it is for me to read it. Love and hugs to you and your family!

Kim

PS: Have you thought about massage...for YOU, not Erik. My friend swears that one total-body massage has done for her what two years of chiropractic care couldn't.

8:08 PM  
Blogger THE PASLAY'S OF IDAHO said...

I CAN ONLY IMAGINE! AND YET, I WOULDN'T BE CLOSE TO KNOWING WHAT YOU MUST BE FEELING GIRL!!! I DO KNOW THAT YOU ARE A AWESOME MOMMY AND YOU ARE DOING EVERYTHING RIGHT!

YOUR DAY IS COMING... TOO FEEL NOT SO ALONE AND BE WITH OTHER PEOPLE THAT KNOW EXACTLY HOW YOU FEEL!! HOPEFULLY THAT DAY WILL REFUEL YOU AND LET YOU KNOW EVEN ONCE THESE PEOPLE GO BACK HOME THAT YOU ARE TRULY NEVER ALONE! REMEMBER THAT YOUR FAMILY & CLOSEST FRIENDS WILL BE THERE AS WELL TO HOLD YOU UP IF NEED BE, HUG YOU IF NEED BE OR JUST STAND BACK AND ENJOY THE SMILE THAT WILL BE ON YOUR FACE AS YOU ARE EMBRACED BY OTHERS THAT TRULY KNOW WHAT YOU ARE FEELING TODAY! I LOVE YOU AND WISH THAT I LIVED CLOSER SO I COULD HAVE COFFEE WITH YOU AND JUST LISTEN...

7:22 AM  
Blogger Aspen said...

I second that about the massage! You deserve a little time for yourself. In fact, maybe I will order a massage for myself. LOL

Chin up little lady. You are an amazing woman and an amazing mother. Feeling blue every now and then is perfectly normal. Wish I could be there to give you a much needed hug.

10:02 AM  
Anonymous Anonymous said...

Hi Nancy,
I spend most days convincing other people (and myself, really) that Sean is not so different. And then I have days like the one you're having. Honestly, I just can't "go there" most of the time. On the other hand, I get upset when people don't acknowlege that Sean is different and can't do what they think he should do. What a conflicted world I live in. Sometimes I think we just need to have days like this to get all the grief out at once. And then, we move forward. I hope you grieve as you need, and move forward when you're ready.

Sandra

11:19 AM  
Blogger Kerry said...

That's interesting what Sandra says - about getting annoyed when people don't acknowledge her son is different. I completely understand that - I get a lot of "Well, he will probably get really big when he's a little older" or "He won't need special ed, you don't know that yet." I'm like, "Ummm... no... he will probably not grow eight inches in three months" and "Umm... well, he's delayed almost a year, so the chances are pretty high he will need extra help in school." I know people are trying to be helpful, but you can be helpful and realistic too. Is it a big deal if he's shorter than others? Or if he needs help in school? Whatever.

I've been obsessing over Brady's teeth lately - he's got a mouthful and he's so cute, but one day not too far away he will be going to the dentist and he will NOT be happy since they are so small and crooked. Ugh!

2:32 PM  
Blogger Lizard Eater said...

Okay, so do you know the bittersweet story about Bittersweet symphony? Here's the long explanation -- http://en.wikipedia.org/wiki/Bittersweet_Symphony -- but in a nutshell, they had permission to sample a Rolling Stones song, but not as long a sample as they used, so the Rolling Stones get all the money from their song.

What a p-sser. But poetic in a maudlin sad way.

7:06 PM  

Post a Comment

<< Home