Aaron and I always knew we wanted to have more than one child. When we met, he wanted 2 kids and I wanted 6. Well, 6 seems reasonable when you come from a family of 9! We also knew that we wanted Leah to be well on her path – meaning her communication choices made and underway – before we had another child. When Leah was 3, it was time. When I found out I was pregnant, I called Aaron at work. He was running youth programs at a local park and when I called he was on the field. I left him this message: Aaron, Lucy is on her way!
When he came in from the field and saw the post-it, he knew what it meant. We had talked about Baby Lucy for quite some time. I remember the early months of my pregnancy thinking about how easy things were going to be. Leah would be starting pre-school and I would be spending beautiful, sun-kissed, California days with my newborn. Even if this child was deaf, THIS time we would be prepared. We wouldn’t even mourn! We felt very ready.
Our 18-week ultrasound brought unexpected news. Baby Lucy had hydrocephalus… and that was not all. They could not see her cerebellum, it was pulled back into the top of her spinal column – this is called a Chiari Malformation. Though they could not get a clear view of her spine, the doctors were convinced she also had spina bifida. Spina bifida is a birth defect where the spinal column does not close properly -there is almost always some paralysis. We did cry. Aaron didn’t want to go to work. I didn’t want to move – I just kept thinking about Lucy’s exposed spinal cord and imagining that any move I made could cause her to bump it and cause further irreparable damage.
I noticed the feelings were so much like when we had discovered Leah’s deafness. And then we made a choice. We decided that Lucy’s spina bifida would be exactly like Leah’s deafness. We decided nothing was wrong, we just needed to educate ourselves and do all we could to care for Lucy. I got online and found fetal surgeons Dr. Bruner and Dr. Tulipan at Vanderbilt University Medical Center in Nashville Tennessee, they were performing fetal surgery for spina bifida. I watched a virtual surgery online, where they repaired the fetus’ spine, just as is it is done once a child is born full-term, but THIS surgery was occurring at 22-24 weeks gestation. Four weeks later, Lucy and I became the 82nd mother/baby patients having this groundbreaking surgery. I was on bed rest for 10 weeks. Lucy was born 8 weeks early.
Her Chiari Brain Malformation was reversed and Lucy did not have a shunt until age 3!
When Lucy was 9 months old, she was diagnosed with cerebral palsy. At age 2 her neurologist said she was mentally retarded and would never learn to speak nor would she be able to communicate through sign language. They said cerebral palsy did not change. It wouldn’t get better or worse. But we believe in miracles!
Lucy and Aaron
Lucy did begin signing when we were creating Signing Time! – My First Signs. She started signing “MORE” and shortly after that she signed “WATER” and then Lucy’s world opened up. First through signs and later through speech. I can’t imagine we would have thought sign language would be the key to Lucy’s success IF Lucy had been born before Leah. We probably would not have guessed that through her will to communicate, Lucy would develop fine motor skills that professionals deemed impossible for a child with cerebral palsy. How could we have foreseen that the confidence and success Lucy gained through signed communication would enable her to later develop speech with her tiny quiet voice, supported by signs for clarification? Now, age 14, Lucy fully participates in a mainstream classroom. She uses a manual wheelchair and a power chair. She still sings beautifully and speaks clearly as well. Her Canine Companion for Independence, Wilona is always by her side.
Leah was the inspiration for “Signing Time!” and Lucy opened my eyes, showing me that sign language is indeed for EVERY child of EVERY ability.