For One Woman, An Unexpected Gift

On Sunday, my mother and sister left. We had all agreed that we needed time and space to be a family of three, but none of us was prepared for them to walk out the door. The tears flowed freely that night as we were left alone together with a fridge full of food, flowers beginning to wilt in their vases and the weight of all our fears falling over us again.

We were afraid of the medical side of Down syndrome, both in terms of the difficulties that Adara might encounter on her path through life and in terms of having to embrace the medical community and countless doctors' visits. We were afraid our lives were going to be overrun with therapists and experts telling us all the things we had to do to fix our child. And, mostly, we were afraid of our own ignorance of the task at hand. We had been planning to parent by instinct. But how could our instincts ever guide us through this unnatural-seeming situation? We felt alone and lost, and very much in love with this tiny creature who needed us so much.

I remember in that first week home feeling as though I had won the lottery, but the winnings were in a foreign currency from a country that could not be found on any map. In order to convert my winnings and spend them, I would have to identify and locate the country, figure out how to get there, learn the language and make the long journey to a strange new place. As much as I love a good adventure, the task seemed huge.

The need to keep Adara fed and growing carried us through those first weeks. She was so tiny that we left the hospital with strict instructions to get food into this child as often as we could. Each feeding for the first 2 1/2 weeks involved more plastic paraphernalia than I care to remember. But more important, each feeding required David and me to sit forehead to forehead on the bed, Adara at my breast with David supplementing with a syringe as she learned to suck. This method, though time-consuming, provided our family with a level of intimacy that I wouldn't trade for anything.

We were so busy with baby care that the trauma we felt faded. And Adara seemed to be doing very well, bulking up in front of our eyes. Nevertheless, we approached our first round of doctor visits with a certain amount of trepidation, unsure that we could trust what we were seeing.

In those first few weeks we had several appointments with the pediatrician and the lactation team. I began to feel like these meetings were part of a conspiracy of confidence-building, as our providers confirmed what we were seeing. With each visit we relaxed a bit more, reassured that our instincts could inform us. Maybe this wasn't going to be all that different from parenting any other child.

Then there was the appointment with the cardiologist. Adara's nurses had noticed a heart murmur in the hospital, so we were back for an echocardiogram. We sat in the examining room, David holding Adara as the technician attached the wires and I cowered in a chair behind them, convinced that half her heart wasn't pumping blood at all and that there was a hole the size of a quarter in there somewhere.

When the wires were detached, we went upstairs to meet the cardiologist. The doctor didn't flinch when I let out a whoop of relief as she interpreted the results. For now, anyway, Adara was okay. There was a hole or two, but they didn't require immediate attention. We would not have to slog our way through David's brother's wedding that weekend with the secret knowledge that Adara was about to undergo heart surgery. This will probably be a reality down the road, but for now we can breathe easier. I never knew I could feel so lucky.

That is not to say that we were done grieving. But as the days passed, the waves of sadness grew farther apart and less wrenchingly painful, and we settled into a routine.

Today Adara is 9 months old and a happy, healthy child. She loves going to swimming lessons with her dad and playing with the dog. She has mastered the arts of rolling over and sitting up, and is trying to get ready to crawl. We are working with a wonderful physical therapist to integrate "therapies" into our daily routines and play. She loves squash and carrots but isn't so sure about spinach and bananas. She likes to wrestle and giggle and chew noses and chins, and can play a rollicking game of peekaboo. She loves to sit quietly and listen to a good book. She is engaging and talkative, and without question the cutest baby I know. In short, she is doing all the things a baby does, and her parents are doing their best to keep up with her newest tricks.

As I look back over the past nine months, I realize how inappropriate the lottery metaphor was. There is no need to convert this prize into any other currency in order to collect on it. I wake up every morning to a smile from Adara and spend the next hour laughing in bed with the most serene and cheerful child I could ever hope for. We have a long journey ahead of us, and I am sure there will be difficult times along the way. But I also know that we as a family have the strength to get through this with dignity, and I am confident that we will find plenty of opportunity for fun along the way.

I have long said I am one of the luckiest people I know. This belief has been shaken a couple of times in the past months, but I will stand by those words today. Life is a wild journey; our job is to make the most of it. ·

This article is adapted from a piece that ran in the Chronicle, a newspaper in Barton, Vt. Comments:health@washpost.com.