Five Years: A Footnote

They told us this would happen. I read all the stories that promised me that one day, Down syndrome would be just a footnote in our lives. It would appear in teeny-tiny subscript, not as the bold heading at the top of every page of her story. At the time, I couldn't believe it. The day she entered our world, those words felt so huge and so heavy, I couldn't begin to imagine how much they would shrink. As I clutched her to me, staring at her red cheeks, folded ears and creased palms, I couldn't understand how this small, helpless, sweet bundle brought with her this enormous, heavy, scary suitcase we would have to unpack. All I could think was that I had so much to learn, there was so much we didn't know, and I was so afraid of what our future held. I didn't speak the language yet, of early interventions and individual education plans and occupational therapies. I wasn't sure I wanted to.

In the beginning, I tried to hope that one day our lives would not revolve around her diagnosis. But it was so hard at first to see past the feeding difficulties, my fears for the future, and the disappointment I felt because of what I thought her diagnosis meant. I thought it meant something other than our beautiful daughter being herself. I thought it meant sacrificing years of hopes and dreams.

We did all that anyone can do. We put one foot in front of the other, we tackled one challenge at a time. Those early days did take a lot of strength and energy. Even though our girl was born healthy, Down syndrome and the challenges it presented did seem to take center stage for a while. Feeding her was so difficult, waking her every two hours, pumping for 15 minutes after every feeding, mixing high-calorie formula with breastmilk and praying she would begin to gain weight. I remember sitting on the floor next to our bed, listening to the whir-thunk-drip of my pump, looking at her laying on a blanket next to me. I was thinking about the next therapy appointment, the books I should read and the sleep I wanted so desperately. I cried and prayed that I would have the strength to give her what she needed.

Just when we thought we were getting a system down, we began to hear strange noises in her breathing, lungs that sounded like a bowl of Rice Krispies that had just been hit with milk, snap, crackling and popping our way into an early and prolonged hospital stay. At just six weeks old, our baby girl was diagnosed with the respiratory virus RSV, and words that bothered me so much more, "failure to thrive." When her pediatrician saw my eyes fill with tears, he told me he was sorry, but she had to go to the hospital. It felt like my failure, my inability to keep her healthy, to give her what she needed to grow. It felt like the weight of her success was on my shoulders, and I wasn't strong enough to carry it.

That hospital stay was five years ago this week. When I sat up all night, rocking my tiny baby who was restless from steroid treatments and struggling to breathe, I couldn't even begin to imagine how beautiful her future would be. I was consumed by the now, by her needs and by my fear. I worried about her brothers, with needs of their own, being neglected for the sake of their baby sister. In those earliest days with our sweet girl, I thought Down syndrome would be the bold heading of every chapter of her life. I could not have been more wrong.

The chapters of Brynnlie's life right now are full and rich and exciting to read. There is a chapter on ballet, where we watch her twirl and jump and learn and interact and dream of being a superhero ballerina.

There is a chapter on the care and keeping of baby dolls, with interactive moments of loving on her favorite real life babies. Presently, every chapter has a reference to Daniel Tiger's Neighborhood, which she could not live a day without. Right now Brynnlie's story is about pretending to bake everyone birthday cake in her play kitchen and pouring us all a cup of coffee. It is about how she is leading her class of typical peers, telling them how to build a bus out of chairs, then making them all sit and take a pretend drive to the Zoo together (with her as the driver, of course).

I couldn't understand it then, but now I see it's true. Down syndrome has a place in our family's story, but it is not the bold heading at the top of every page. It doesn't dictate each new chapter we will explore. It is simply a footnote, a small piece of information that enhances our story and helps others to understand where we are on our journey. We have new chapters ahead of us, and I'm sometimes fearful about them as well. Starting elementary school, reevaluations and meetings and individual education plans are still part of what we will face. I still get nervous when she gets a bad cold. But I have learned that this story is really about Brynnlie Grace, and she is not about to let Down syndrome or all the rest take away from the chapters she gets to live.

I wouldn't want to write her story any other way. I cannot imagine our family, our community, without Brynnlie Grace. Our view of the world is broadened and brightened by her presence, and also by the fact that she does have Down syndrome. I love having that footnote enhance our lives, and the lives of those who know our little girl. If I could go back in time, to find myself young and dreaming of my future and family, I would tell myself to dream of one day having a little girl with Down syndrome. I would tell my adolescent self that it was the best thing that could ever happen to me. I would tell myself as I planned for my future family that it would be full of more love than I would have ever believed possible. I would whisper to my heart that this was actually exactly what I needed for my journey, that it would be the extra glue that would hold our hearts together, slow us down, and remind us of all that was really important. I wouldn't believe myself then. I have a hard time believing it now.

We're only five years in, but her story keeps getting better and better. Life is good. It's beautiful, really. And having Down syndrome noted among the pages of Brynnlie's story only highlights how beautiful her precious life is.