Tuesday, September 15, 2009

The Blessing of Tragedy

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.


DownTownDan said...

Wow, sort of heavier than a food post, isn't it? Maybe you didn't change, maybe you were just uncovered. Like someone pulled off your old husk and exposed the true beauty that was buried deep inside. Sometimes I feel like that's what happened to me.

Lacey said...

Your story sounds very familiar to ours. Except for some reason the down syndrome diagnosis didn't bother me, the heart didn't bother me either since I took care of heart babies every day. But he spent 17 weeks in the PICU on the vent and we almost lost him a couple of times. The worst summer ever.

TUC said...

Lacey, I cannot even imagine 17 weeks on a vent. Jaxson is such a fighter and so are you.

Anonymous said...

Wonderful passionate post! Beautifully stated. FYI- I feel the same way about my daughter as you did your sons even with her DS. She is clearly the single most wonderful child in the universe, to me. I delight in her joyous presence every day (except when she's driving me bonkers):)

TUC said...


"I delight in her joyous presence every day" It was hard for me to admit that it took almost losing her to get to this point. but I am here now, and at peace.

Lyla Lindquist said...

Oh my, how He knew that you were the right one to be mama to this wee one. He saw, even if you could not.

Beautiful stuff, both of you.

Jo Ashline said...

AMAZING post, my friend. You captured your experience in such a way that I was with you in the depths of your despair as the miracle of your daughter was slowly and painfully revealed to you.

God Bless You.

Anne Lang Bundy said...

"She is alive!"

And a delight to us. She is a beauty and a delight. "I PRAISE You, Lord, for the beauty and delight of LIFE!"

Anonymous said...

the Lord seems to continually be working on all of our hearts.

came over from the high calling blog...


Sasha@ Blyssfulhealth said...

What a post! I felt your energy through it. So glad that you have the opportunity to love and cherish your little one.

Kristinn&Thelma said...

What a post! well I guess we all have these feelings at some point, at last I did. Your girl is beautiful and so are the boys you are lucky :)

Love from Iceland

Anonymous said...

TUC- you are clearly a loving person and I think that you would've come around anyway. We all struggle in our own ways and it's a lifelong process of adjusting our inner compasses.

Marcia said...

Wow..I just linked here from somewhere else, so I've never read your blog before.

How brave of you to be so honest, first with yourself and then with us. Thank you for sharing this.

Teresa @ Grammy Girlfriend said...

What a wonderful post.....Love your blog....and am adding it to my sidebar...

Far Above Rubies said...

You better believe she's alive. God is good. As always my friend - you make me laugh, cry, and wonder in amazement at the beauty of your writing.


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