I have a confession to make.
There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.
Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.
Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?
I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.
Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.
And then the Lord God reached down and slapped me so hard my head spun.
Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.
I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.
She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.
Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?
I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.
As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.
As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!
And that is the greatest blessing of all.
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