While going for a run at the gym this past Friday, my next topic found me. I was walking into the Hoover rec center when several school busses were dropping off students, obviously special needs kids of all sorts. Down Syndrome, physical disabilities, Cerebral Palsy, and many others I am sure. They were there this week for a swim meet. It didn’t hit me until I was at least 1 mile into my 5 mile run that this would be what I would right about. Part of the indoor track overlooks the olympic size swimming pool. Once the meet began, I started glancing down as I ran each lap. Excited kids, parents swollen with pride and eager instructors helping the kids swim and compete. It was amazing and inspiring. It made me think about the strength these parents must have raising a special needs child and really just how incredible they must be.
I do not know what is like to raise a special needs child but I do know what it is like to be told I may have a baby with a permanent deficiency and how your mind begins preparing for it. This is Elizabeth’s story.
My daughter, now 4 1/2, was born at a University hospital after I was induced one week overdue. I had wonderful prenatal care by outstanding doctors but 6 days after my due date, they decided to induce. I was barely dilated when I arrived at the hospital so they broke my water and started the Pitocin drip and after 9 hours of horrible contractions, I had hardly dilated any more than when I arrived. The doctor suggested a c-section. I agreed although I was crying, feeling like a failure. Just before 5 PM Elizabeth was born weighing in at just over 9 lbs. I was feeling a bit relieved that it was a c-section!
I will skip ahead in the story to night number 2 in the hospital with my daughter. At around 6PM, a nurse came I to tell me that Elizabeth’s breathing was labored and they had moved her to the NICU just as a precaution. They felt she likely just had fluid in her lungs that is normally expelled during delivery. I went down to feed her every 3 hours during the night but by 3AM she was already moved back up to the nursery on my floor. That morning, Roger was there and we received a visit from a doctor we were not familiar with. She was an intern in genetics. She informed us that while in the NICU, the doctor on call felt that our daughter may have some facial features that favor children with Down Syndrome so he ordered what they call a FISH test. This is some sort of blood test to check for the extra chromosome. They also drew blood to perform the more extensive karyotype. She informed us that after a physical examination, they did not see any of the specific physical traits seen with Downs Syndrome (something about spacing between toes, certain pattern on the palms of hands and the rest was a blur) but that they could not be sure until test results came back later in the week. I am also going to skip the details about the “pep talk” we received from this doctor. It was overwhelming.
Two days, more visits from genetics doctors and many tears later we were sent home with our baby girl. Part of me felt like she was perfectly normal but part of me was scared to death. She was a gift from God regardless. I knew in my heart that I loved her no matter what but was feeling unprepared. The day after we were home with our precious girl, we got the call that the test was negative. She was fine.
I have complete adoration for moms, caregivers, teachers of these very special children. You deserve more honor than I am sure you ever receive. To my dear friend who has recently adopted a special needs child, you are amazing and I am in awe of what you are doing and pray for you on your exciting journey. Several fellow moms and friends have told me that I should never tell Elizabeth her story. “She just doesn’t need to know that”, I’ve been told. I think maybe one day I will tell her or maybe she can read this. I don’t see any harm in her knowing that we would have loved her deeply no matter what.
