Erik Quinn: The Heart of a Family: God's Hands

Friday, July 20, 2007

God's Hands

It's almost two o'clock in the afternoon, and I haven't started work yet.

I just broke down in front of my mother for the first time in months. The presence of WS and what it means has permeated everything, and there is just no escape from it today. It just catches up with me from time to time. Thankfully, I am getting quite good at ignoring the dead weight of it on me and am quite capable of going through the motions that my life requires in all of the roles I must fill. Through each month that has ticked by since the birth of our son, I never failed to put on lipstick. I even manage to enjoy moments of joy on an almost daily basis. If you chipped away at my smile like an old painting, though, you would be able to see the next grim, dark layer of grief that will never wash off, flake, or peel. It is a layer of badness that no amount of optimism or ignorance will erase, and I have learned to live with it without flinching most of the time. After all, there is not much a little lipstick can't at least temporarily cover. Then there are days like today. These days are few and far between, but they still bring me to my knees.

I watched the Good Morning America segment yesterday. If you peered through my living room window at that moment, you would have seen me sitting on the couch clutching my cup of coffee, still wet from the shower and seemingly ready to face the world. Diane Sawyer is one of my heroes, and hearing the two words that have altered my life forever coming from her perfect lips so casually at that time of the morning made me feel like I was dreaming. I sat to watch and listen to this highly-anticipated segment and found it interesting, although I felt the average person may conclude like I did that Diane's questions were not satisfactorily answered by the pleasant but slightly bored-appearing Dr. Reiss and merely produced more questions. The segment mentioned living with the "joy gene," which I found a little strange, as my child is lacking genes and doesn't have anything extra.

Ben, the 21-year-old featured in the segment, is also one of my heroes. I am quite familiar with his face, as it appears on the cover of my WS manual and in the 60 Minutes video I have at home. It it my hope I will be able to meet him next year. Watching him grow up in the media has been fascinating. The closeup of his hand in the segment really bothered me, as it is still very difficult for me to look at the hands of those with this syndrome. I shook the hand of the woman with WS at Sophie's Run, and I will never forget how it felt in my own hand. They seem clumsy and frail at the same time. They appear to me to belong on old people. It probably sounds strange, but I am afraid of watching my son's large, gentle "syndrome" hands age. I can see the features of the syndrome seeping into his face as he grows, as can the people who work with him, and I find this experience devastating at times.

The emotional hangover from watching this piece took some hours to kick in, but it did, no matter how valiantly I fought it. As I tossed and turned in bed for what seemed like hours, I wished I could escape my own brain, which began to tease me in that foggy state between consciousness and sleep. I heard voices telling me that I was crazy for not wanting to have a "normal" child. I heard my own voice stating that having a normal child wouldn't erase the strange affliction that plagues my son's body and mind. I heard myself say how much I loved the child I had already, how I was pouring my heart into raising him, and how I was so very tired and thought I deserved a rest. I heard another voice telling me I sucked at having babies anyway. If another child didn't die, there would be something horribly wrong with them. I then heard my voice again, screaming -- loud, angry jumbles of words telling the world to get off my back. I felt one single tear trying to filter through my eyelashes. I opened my eyes, amazed there weren't more behind it. But there weren't. I stared at the ceiling for a while and then closed my eyes. The voices continued. They droned on for another hour like I was sitting at a cocktail party in hell.

Stop!

God help me. Please.

Now I lay me down to sleep,
I pray the Lord my soul to keep.
If I should die before I wake,
I pray the Lord my soul to take.


The voices faded into the darkness until I heard only my own, telling a story.

When Erik was little, I remember him crying for hours on end. I used to run one of my fingers down his stick-skinny arm covered in loose skin and smiled at how large his hands were. I thought to myself this was a sure sign that my son would be strong and masculine. I was oblivious of the fact a chromosomal abnormality had distorted his body ever so slightly in this way. I told myself during those desperate hours that his crying would cease eventually, and he would become a man someday. I pictured his tiny arm grown and casually resting on the sunny windowsill of a pickup truck as he took someone he loved on a drive.

I was certain that he would care for someone with those hands. I just knew he would protect someone with those hands. He would someday hold his own babies with those hands. I just had to hang in there and get him through the colic.

Now I know the truth.

I know his hands will always be clumsy. I no longer dream about him protecting anyone but himself. I know his own brain will play tricks on him, making everyday tasks feel seemingly impossible. I no longer dream of him becoming a doctor or a teacher. I simply dream of him learning to train those wonderful, clumsy hands to tie his own shoes someday. I would be so incredibly happy if he could do that. How can a mother's heart NOT break when she sees someone with the same syndrome her child has struggle to put a piece of paper in an envelope? To hear that this man never had a best friend? How can my son be wired to desperately hunger for social connections and lack the ability to make them? Is this some kind of sick joke? What kind of future can this planet offer my child?

I dream of him finding just one friend who won't leave him behind as they grow. I dream of him not having to grow old alone. I simply dream of his body allowing him the opportunity to grow old at all.

Stop. That's enough.

I padded to the bathroom and dug through my drawer to locate a blister pack of sleeping tablets. I poked one through the foil, broke it in half, and swallowed the chalky medicine, chasing it with a swallow of lukewarm water I collected from the tap.

Stop.

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9 Comments:

Anonymous Gua said...

We're all so fragile these days. I hear myself saying to people, smiling all the while, that my grandson has WS, that he's doing incredibly well, under the circumstances; that we treasure our time with him every day; that in our blackest nightmares we never imagined life would be this way; that my daughter is a strong woman I couldn't be prouder of. I tell them what a joy Erik is, how much he has already given us. But always, that sadness weighs so heavily, and unlike most sadness, I know it will never go away. We had a major meltdown at our house this week. I suppose we can expect that from time to time. We picked up the pieces, reassembled them, and are moving forward. It's a hell of a way to live, but it's our life now. And tomorrow we'll feel better than we did yesterday. We love that little guy more than life itself.

Love, Mom

8:35 AM  
Blogger Every minute counts.... said...

Wow...not much to say but hold on. Know that I felt alot of what you describe that very same day. Still hearing them talk about WS in the news makes me tear up. It is hard to shake and I never really have,I just get better at hiding it.

Hope there are better days to come!
Noel

6:34 PM  
Blogger Katie said...

Oh Nancy,
:( there are so many emotions.
its amazing how in one day you can feel so happy, so sad, so determined, so defeated and so very numb at the same time. Thank you for writing, you express what i cant and you are like a therepy session for me. i just want to give you a big hug and say thankyou.
xxoo

12:46 AM  
Blogger Lisa R said...

I am glad that you are feeling better today...I also worry about Tatum not having a close friend...I think it is very coll they way we all process things so different...your writting is beautiful.

Love You

3:40 PM  
Blogger Aspen said...

TEARS...I love you dearly.

9:32 AM  
Blogger Heather said...

Sorry I haven't commented yet.(louisville trip). Wow, you really said it all. I know how it feels. Really. Heather

9:45 AM  
Blogger Rosemarie said...

Crying with tears only a mother could understand. Yes, the dreams you once had have been changed, but hold on for him and pray that God's best will find and keep him safe.

I appreciate your honesty, and once again, it brings me to a place of gratitude. Blessings in abundance.

9:54 AM  
Blogger ellasmama said...

You've brought me to my knees emotionally (I'd be on them except that I'm at work right now). I feel all these same things deep inside, but feel I can rarely express it. I'm constantly trying to look on the bright side and provide a positive spin on everything related to our daughter with WS. I hear you... when I more often now than ever catch glimpses of WS characteristics showing up in our daughter's physical features. It's not all the time, just once in a while as she's only 20 months, but it catches me off guard. And I tend to quickly push that feeling of sadness and despair inside because I innately can't show signs of weakness -- "I must be strong for my daughter." It hurts to be strong. It hurts to be weak. Thanks for sharing so much of what I'm feeling. It helps. And I know I'm not alone. Perhaps we'll meet at a WS convention one day. -Lisa

11:41 AM  
Blogger ellasmama said...

You've brought me to my knees emotionally (I'd be on them except that I'm at work right now). I feel all these same things deep inside, but feel I can rarely express it. I'm constantly trying to look on the bright side and provide a positive spin on everything related to our daughter with WS. I hear you... when I more often now than ever catch glimpses of WS characteristics showing up in our daughter's physical features. It's not all the time, just once in a while as she's only 20 months, but it catches me off guard. And I tend to quickly push that feeling of sadness and despair inside because I innately can't show signs of weakness -- "I must be strong for my daughter." It hurts to be strong. It hurts to be weak. Thanks for sharing so much of what I'm feeling. It helps. And I know I'm not alone. Perhaps we'll meet at a WS convention one day. -Lisa Elm

12:57 PM  

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