Before I became pregnant with Lilienna, I worked as a special education teacher in a private school. I felt, working with special needs kids, I had been given a great gift. At the same time, I felt sorry for their families, who seemed to endure so much.
During my pregnancy, I felt that I bonded very strongly with our littl-girl-to-be. All tests came back normal, the baby grew exactly as expected, and when I would lay a hand against one side of my stomach, I could feel her curl against my hand. I could barely wait to see her. I spent my days day-dreaming of what she might look like, what she might want to be when she grew up, how we would play at the park with the kids I would see as I was out walking.
Lilienna was born a week early, after a difficult labor which resulted in a C-section. They held up a beautiful baby with lots of hair, let David hold her for a few moments, and whisked her off to warm her, weigh her, and bathe her. As David and I were in the recovery room, a pediatrician and an intern came in, and after some congratulations and small talk, the doctor suggested that I may have noticed some facial characteristics in the few minutes we had been able to spend with our daughter. My body went cold. I reminded the pediatrician (as if she didn’t already know) that Lilienna had entered the birth canal face first and had some bruising and swelling because of that. When she said “Yes, but?”, I felt like I was falling into a black hole where sound filtered through in some garbled surreal manner. I heard the words “Down Syndrome”, words I had never expected to hear in relation to my child. We cried, and I thought of all the IEP meetings, aides, special equipment. I thought of the families I knew who had struggled with marital and family problems which resulted from the stress of caring for a child with special needs. I was afraid of all the difficulties I had watched so many children with special needs face. I did not want that for my daughter!
I kept asking for my baby, and we were told she was having trouble maintaining her body temperature. A geneticist came in to talk with us and answer our questions. She gave us a few pamphlets. As I read them, all I could think was “How is this little bit of bare-bones information going to help me raise my child?”
When we were finally able to see our baby, hours later, I thought she was so beautiful. I loved her so much and felt so broken-hearted at the same time. I was so afraid for her future. I couldn’t believe that this “broken” baby was the same one who cuddled up against my hand, and calmed when I sang, before she was born.
The hardest part, I think, about not knowing ahead of time that Lilienna had Down Syndrome was that I was trying to deal with all of the emotions and thoughts whirling away in my brain while I was trying to care for our first baby. On the other hand, I am so glad I had Lilienna’s beautiful baby face to relate to, as I struggled with my fears and sorrows. I soon came to agree with my mom that it was the loss of our expectations we were grieving, not the lovely baby girl we had in front of us. She was perfect, she was ours, and we adored her.
I continued to grieve lost expectations, going through periods of denial and times where I feared almost overwhelmingly what the future would bring for her. I still do from time to time. Worries sometimes catch me unawares.
Yet when I look at Lilienna, all I can see is the gift we have been given, the amazing, silly, feisty little girl who is as essential to me as the air I breathe. Sometimes, I am sad when Lilienna misses milestones (she never really misses them, only puts them off a bit). I am sad and feel defensive at some comments people make or looks they give, assumptions they make, etc. But when I look at my daughter, all I find is her extraordinary determination, her very clever sense of humor, her curiosity and incredibly strong will. I watch her sometimes, and I feel so much love, it makes me cry. I realize how wrong I was in feeling sorry for the families of the special needs kids I used to work with. There is nothing to be sorry about- I feel so fortunate!
Lilienna has taught me more than I ever knew I needed to know. She has brought into our lives the most beautiful, wonderful, real people I have ever met and made us a family. I have found friendship and support I never knew was possible in our family of Downs Families. I have found a better world than I ever knew existed in my lovely little girl.
Written by Sara Archibald, mother of Lilienna