For My Daughter on Her Sixth Birthday

She couldn't eat, wouldn't eat. Lived on nothing. Never cried, never indicated hunger. Test after test, specialist after specialist, and she grew thinner and thinner. But her wide smile never wavered.
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I was terrified when I became pregnant with my daughter. I feared it would be the stupidest thing I ever did. After all, four years earlier, we had learned from baby Matthew's autopsy that we had a 1-in-4 re-occurrence risk for the kidney disease we carry. Adopting K was the start of a new life for all of us -- Andrew and I regained our dream of becoming parents; K came out of foster care into a family that would have gone to the ends of the earth for her -- and here we were, rocking the boat that had finally reached calm waters.

I wanted my daughter to have a sibling. I grew up in a family of four girls. My sisters are my clan, my gang, my best friends. But there are no early tests for the kidney disease we carry (it is so rare that there hasn't been enough research to identify it with CVS or early blood tests). So we held our breath and prepared for a long wait. An amnio would provide our strongest "early" results as to whether or not the baby was OK.

At the four-month mark, on the 31st of October, nervous and hopeful, we went for the amnio. The pre-amnio ultrasound took a really long time. The tech kept leaving the room and then coming back and redoing the ultrasound. Then she left again, this time for 40 minutes.

"Something is wrong," I told Andrew, nauseous and worried.

A minute later, the door opened and the head of Genetics came in, along with several other doctors.

Yep, something was wrong. It was a trick and not a treat. One of the doctors sat down and took my hand.

The ultrasound showed that the baby had a severe bilateral pleural effusion and fluid backing up around the organs. Hydrops fetalis. We were told to prepare ourselves, warned that there was a 50 to 90 percent chance that the baby would die in utero. Unbelievably, it had NOTHING to do with our kidney disease; it was just rotten f*cking luck. Lightning does strike twice.

All we could do was wait because it was too early to deliver the baby. We would have regular ultrasounds, and basically, at some point, we would come in to find that the baby had either died or that the condition had reversed. Bets were not on the latter. In the meantime, the doctor scheduled fetal echos, blood tests, etc. as we tried to figure out why this was happening. We never got an answer.

We went home to wait and see how it would play out. I sort of lost my mind -- I became strangely convinced that I was allotted only one child in this life, and I prayed to God that if I could only have one child, please let it be my K, the child I knew and loved. I became terrified that if the baby indeed pulled through, it would mean that I would have to lose K. I couldn't let K out of my sight, so certain was I that she would be hit by a car or choke or get trapped underwater. It is actually a fascinating testament to how completely a parent can love an adopted child -- I was willing to sacrifice the biological child in my womb if it meant keeping my adopted child safe. Here it was, proof of my love for K, an unsolicited and sickening psychological test.

And then one day, the impossible happened -- the ultrasound showed that the water suffocating the baby's organs had receded! The baby was going to survive, although no one could say how her body would be affected by the problems she had experienced in utero. She would be changed, but she would also survive.

She was, and she did. When she was born, she never cried and didn't take a breath until she was worked over. She received a 2 as her first overall APGAR score. They took a second score a few minutes later, and it was better, up to a 5. They took a third score several minutes later, and it was a 7. But to me, she was perfect and beautiful from the start.

Her eyes sparkled with a brightness from the moment she first looked at me. She was an old soul in a tiny new body. That first year, there were many setbacks. She couldn't eat, wouldn't eat. Lived on nothing. Never cried, never indicated hunger. Test after test, specialist after specialist, and she grew thinner and thinner. But her wide smile never wavered.

I suffered bout after bout of mastitis, as my body tried to make sense of an infant that preferred to go eleven hours between feedings. One particularly bad mastitis infection landed me in the hospital for three days on IV antibiotics.

It probably didn't help that I was eating peanut butter, hummus and other foods that we did not yet know she was deathly allergic to, and then I was offering her my tainted milk.

"Failure to thrive," the doctors wrote on her charts. Maybe that's how it looked medically, but then there was her smile, her curiosity, her responsiveness to the people around her. In my mind, she may have endured a failure to gain weight, but she was never failing to thrive. She was constantly sick, constantly catching infections, but the sparkle in her eyes never went away.

At 12 months, she was still unable to roll over or pull herself up, but she could speak in sentences. Every week, she did therapy after therapy after therapy. She learned to drag herself around in a weird way, pulling one leg behind her, and this was how she moved for months. Meanwhile, she now spoke in paragraphs and sang from morning until night, making up complex songs. She learned to stand, to walk, to dance and to run by the end of her second year.

At age 3, she was still on an 80 percent liquid diet (Pediasure), and we started another year of feeding therapy. She could write and sing and compose songs.

By age 4, she could recite the Gettysburg address. And, more amazingly to us, she could eat food and run and play.

By age 5, despite spending the end of the summer in a wheelchair with a broken leg, she started kindergarten like everyone else her age, quickly becoming famous for her cast. After two months in a cast, she relearned to walk, a process that took far longer than we expected. I remember when she learned to walk the first time, and I remember when she learned to walk the second time, and I thought my heart would burst with joy.

My beautiful baby is 6 today. Willful, bright, resilient, stubborn and lovely beyond words. I marvel at the passing of time. Currently, she is obsessed with metamorphosis. She has actually asked me to make her a metamorphosis birthday cake. "Meta means higher," she explained, "and morphosis means self-change process, so," she continued with delight, "metamorphosis is a higher self-change process, where you go from a being in a lower state to one in a higher state, like a caterpillar to a butterfly."

It seems fitting that her emphasis is on metamorphosis, for that is the very definition of AR. I think of her as a baby in my belly, fighting for her life. I think of her as an infant, trapped in the cocoon of her body, unable to move much but waiting and biding her time. I see her now, emerging as a beautiful butterfly, finally able to spread her wings and fly -- delicate yet so very, very strong. Take flight, little love, and grace the world with your presence.

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