I remember reading all the physical characteristics and health concerns in Down Syndrome: A New Parent’s Guide and thinking I gave birth to some sort of Mary Shelley creation. The pages and pages summarizing possible major health concerns that Hannah could face made me beyond afraid of our future. Everything from the top of her head to the tips of her toes, inside and out, have cells that contain that little extra chromosome. In my cloud of grief I would forget that Hannah would only possess varying degrees of the characteristics and some might not be present at all.
As someone who dislikes surprises and loves to plan, I really hated the “wait and see” life we were about to lead. I wanted a doctor to hand me a test result showing me where Hannah landed on a spectrum of health problems, developmental delays, and intellectual disability. I didn’t like the unknown of the varying degrees. I tried to convince myself we could take each day as it came but couldn’t fathom making more mental and emotional space for another problem.
So far we’ve been lucky that Hannah only had the heart defect and that it was repairable. Like I said with Hannah’s eye exam, I approach every appointment with cautious optimism. I hope for the best but plan for the worst. Even when we took her to the pediatrician to check out her lingering cold I was making mental preparations for a night in the hospital. I try to remind myself to be thankful for Hannah’s health because there are children dealing with much worse varying degrees than she is.