What to Expect When You're Expecting…a Child with Down Syndrome
11 years ago today, I was holding a newborn Jack in my arms. Trying to nurse his weak body that unknown to us had a gaping heart defect which would require a major cardiac repair in just a few short months. The neonatologist had already entered the room to inform my husband and me that she was 99% sure our son had Down syndrome. JR and I were shocked and in denial. All of the physical markers they pointed out to us could be explained away in our minds, and we did just that to make ourselves feel better. The labs would be delayed for 10 days because of it being the week of Thanksgiving. Slant to the eyes? Emma had that, too. Gaps between toes? You should see my toes! Low muscle tone? Didn't seem that bad to me. Single crease across the palm of his hand? JR and 4 of his siblings have the same thing! I went through a range of emotions from anger to denial to shame. The only shame I have now is that I had shame then.
When our 4 and 1/2 year old, Emma came to the hospital room to meet her baby brother for the first time she said, "Oh, Mommy! You had a Chinese baby!" I began to fear the doctors were right. One of my first thoughts was how having a child with Down syndrome would impact Emma for the rest of her life. I grieved the thought of her having to take care of a sibling after her parents had passed. Wow, when I see them today, I realize what an unfounded fear and grief this was. Emma is a better and more grounded young lady because Jack is her brother. We went on to have another child, Lou, who is 19 months younger than Jack. Emma and Lou argue about who will "get to" live with Jack someday if he requires that level of support. Dumb me.
When Jack went to Vanderbilt at four months of age for his cardiac repair, I prayed like I'd never prayed before. Part of me felt like I was saying goodbye to my little fella whom I now loved despite whatever might be wrong with him. I prayed this prayer repeatedly: "God, I don't care what he grows up to do or be. I don't care if he ever walks or talks. Just please let him live!" Jack lived. His heart is repaired and there are no other plans for future surgeries; he takes no heart related medicines, which is miraculous.
I delved so deeply into the study of how to help Jack, how to improve his quality of life. Within a few months I knew everything a person could know about Down syndrome, but the road changed beneath our feet, again. At age 2 Jack began to show signs of Autism. By age 3 Jack was diagnosed with Autism. We jumped onto this new road and learned everything we could learn about Autism.
As I reflect back on the last 11 years, I think of the many challenges we have faced with Jack, sure. But the joy of being his mommy far surpasses any of the times of trial. If anyone thinks I'm a Sally Sunshine, think again. I get it, I know Jack has challenges. I am not in denial about what those challenges might bring to his future, but every kid has challenges; Jack has different ones.
I am often asked to call or stop by and talk with parents who have a prenatal and/or postnatal diagnosis of Down syndrome for their baby. I am often uncomfortable doing so. There are many reasons why, but I would sum up my discomfort with these words, 'I don't have the answers'. I don't know how a certain and particular child with Down syndrome will turn out any more than I know how a child without a chromosome anomaly will turn out. I can't predict the future! As I have known many baby boys, born perfectly, later to be diagnosed with autism, when I would have guessed, "hey, baby boy, looks great, perfect karyotype, all looks great," and I would have been wrong. The karyotype of chromosomes makes us think we can "box in" a child's future somehow, and nothing could be further from the truth.
To new parents of a child with Down syndrome I would say, you call me, I won't call you. If many folks try to call you predicting the future, beware. I am no soothsayer and I know that the range of abilities for a child with Down syndrome is as varied as that of a child without. I can tell you a few things of which I am sure: There will be a slight slant to the eyes; there will be a smaller nose (not a bad thing right?), there will be some speech issues. Those are the three things I have seen and observed in all children with Down syndrome. That's it. How can we guess what/how any of our children will turn out to be? What would one say about all boys? All girls? All blondes, all brunettes, all Caucasians or African Americans. It's no good to box in groups of folks, any folks. I have known folks with Down syndrome who are musicians, folks who drive, folks who live independently, folks who marry! On the flip side, I have known folks with Down syndrome (including my own son, Jack) with a dual diagnosis of autism; no expressive language, limited adaptive skills, etc. The thing is, I can say the exact same things about kids I know born without Down syndrome. Why do we do it?