Ordinarily (and by ordinarily I mean “for the last three weeks”), I try to keep my more religious opinions elsewhere, but this one has had me thinking. How should I respond, or should I respond to the suggestion that Hope should be “healed”?
It’s taken awhile to determine my approach to the topic and something I read recently kind of brought it to mind yet again. You all know by now that I’m hooked on Henri Nouwen, so this week I read Adam: God’s Beloved, a memoir/biography of the very special relationship that Henri had with the first core member of L’Arche Daybreak that he cared for. Adam could not speak, or walk, or do pretty much anything on his own and yet in him, Henri Nouwen found a spiritual guide and saw the face of God. Now obviously, the long and intimate relationship that Henri and Adam shared was built over time, it didn’t just magically happen. When Henri was first assigned to Adam he was horrified. But as he came to know the people with disabilities who lived in the L’Arche community he began to see beyond their diagnosis and learned to relate to them as people. One particular story stood out to me on this topic:
I still remember a woman visiting the New House, walking right up to Adam, and saying, “Poor man, poor man, why did this happen to you? Let me pray over you so that our dear Lord may heal you.” She motioned the assistants to make a circle around Adam to pray. But one of them gently tapped her on the shoulder and said, “Adam doesn’t need any healing; he is fine. He is just happy that you came for dinner. Please join us at the table.” I do not know whether this visitor was ever ready to be touched by Adam, to see his wholeness and holiness in his brokenness, but she did come to realize that everyone in the house was very happy with Adam the way he was.
I don’t know that, except once, I’ve ever prayed for Hope to be “healed.” I prayed a lot of “Dear God, not this, not this” — does that count? But I was always a little reserved in my demands, I thought I should be grateful for what I’ve got. Things could be much worse, let’s not tempt fate. And then there is the ongoing challenge/growth process of loving Hope for who she is — every part of her, right down to her atypical 15th chromosome and all that it will entail — but not loving Prader-Willi Syndrome itself because, well….it sucks. I’ve spent a lot of time this past year wondering whether, if I could snap my fingers and make PWS go away, would I? I’ve worried that to do so would mean that I really didn’t love Hope, all of her. For awhile, that was the hardest question I had rolling around in my head — how do you love the baby but not the disorder, especially when the baby has the disorder?
Agh, I’m rambling….The point is I’ve finally gotten to the point where I can say with some certainty that if I could snap my fingers and make Prader-Willi go away, I would in a heartbeat. But praying for healing over and over again seems different. I’ve gone on record with God, he’s quite aware of my feelings over the whole PWS-thing. I’ve registered my complaints, they’ve been duly noted. For all intents and purposes, they are beside the point. The fact of the matter is that Hope has Prader-Willi Syndrome and will always have Prader-Willi Syndrome. It’s a part of every cell of her body. The egg that was fertilized, that became Hope, had two copies of the 15th chromosome when it should only have had one. That little glitch happened 35 years ago while I was safe in my mother’s womb. That special little egg waited 34 years for its turn down the chute, and when Mr. Sperm offered his 15th, my very independent egg said, “no thanks, we’re covered.” If the father’s 15th has been accepted, a viable embryo would not have developed and there would be no Hope.
This is who Hope is. She who was knit together in my womb, she who is fearfully and wonderfully made.
For me, prayers for healing seem to shortchange Hope. As though she is somehow inherently broken, defective, less whole–and will always be so–because of her genetic condition.
I don’t pray for healing anymore, I don’t need to — it’s a given, why belabor the point? But mostly it’s because when I look at Hope I don’t see somebody who needs to be fixed. I don’t see a child that is broken or defective. I see a child who is different, to be sure. I see a child who brings me a level of worry I never knew imaginable. But I also see my beautiful, perfect daughter — and she is perfect….just a different kind of perfect.