Friday, October 16, 2009


The night we sat in our kitchen, the words Costello Syndrome ringing in our ears, deafening, insistent, inevitable, I said to Colin, “I think these are the moments when it helps to be religious. To feel like there is a reason, a purpose for this. That there is a God that chose this and all we have to do is have faith.” But we are not. And there was to be no such reassurance. We would find that somewhere else.

Not that religion gives pat answers. Not that God cannot be argued with, challenged in his wisdom, asked for more. Children are born with syndromes, medical anomalies, challenges and futures we could never have imagined, and there is nothing you can do about it as a parent. The helplessness is absolute.

Over Willa’s 18 months we have had many people tell us they are praying for us. Many people we do not know. Many people we have never met. Word has spread in circles we have never ventured that there is a child, a family, that needs help from God. Candles are being lit.

I am so thankful for all of this. I have found myself saying my own prayers, not to anyone in particular but to whomever may be listening. It can’t hurt. I haven’t found religion in all this but I have found that there is a beauty in prayer, in the way it connects people. To know that someone closes their eyes and offers up hopes and gives energy to our daughter, an act of kindness that makes us less invisible.

So many ecclesiastic words are bandied about in regards to children with special needs. They are “angels” they are “gifts from God” they are going to teach us lessons about love, forgiveness and strength. But that doesn’t tell me why I had a daughter like Willa. I had learned many lessons previous to her arrival, believe me. I know a lot about love, forgiveness and strength.

For me, seeing her Costello Syndrome as a statistical short straw is liberating. We have no burden from this “gift.” It just happened. It just happened to us. And so we have to find a way of dealing with it.

And still, I pray. I pray for all the other families I see now who can no longer be invisible. I pray for the families who are about to be rocked to their very core. I pray for these children that their lives be happy. That they find acceptance and love and are seen in turn by eyes who will see beauty and illness, despair and deep contentment.

I pray for us, I pray for Willa, I pray that someone is listening, I pray that if I am meant to learn more lessons I am worthy of the extra knowledge and will not fail the challenge of my life. While I cannot find peace in religion I can find peace in myself. In the mash of all I feel and hope for and am confused about I do think that there is great purpose to all things. I’ll light candles too, something to light the dark and perhaps enough to see by.