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.