When I was working in the hospital in the pediatric ward as a resident doctor-in-training, one of the patients that was admitted frequently was a Down’s Syndrome child with a cleft palate. The cleft palate is an incomplete closure of the roof of the mouth that separates it from the nasal area above. Functionally, this meant that since he was bottle fed, he would get the formula in his nose. This lead to multiple ear infections, and some of those infections led to hospital admissions.
He also had other complications of Down’s syndrome. He was non-verbal and still only crawling, not yet able to stand on his own. He had the developmental delay expected in Down’s syndrome. He looked like a lumbering 9-month-old when he was actually 23-months-old.
However, when anyone entered the room, this little African American boy had a smile that went from ear to ear. His face would sparkle, and his joy was infectious. The nurses loved him. One weekend, he was alone in the room. I had finished my work for the morning, and I was going to be there all night. Since I had the time, I picked him up for a walk around the wards. The nurse put a towel on my shoulder for the drooling. I got the little red wagon from the playroom, I took some of the other kids that were able to leave their rooms for a ride. Some of the older ones went for a walk with us. Thinking back, it must have been an interesting sight.
One morning, I came into the room for the usual morning rounds to check on all the kids. The mother was in the room. The nurses had told me that she was usually at work, so I had only seen her a couple of times.
I wasn’t sure how to say this, but I thought of the joy that this baby brought to me and the nurses when he smiled. I said to her, “You are blessed to have a kid that is always so happy.”
A look flashed across her face, and I suddenly realized the deep burden that she carried as the mother of a Down’s Syndrome child with a cleft palate. I saw the world for a moment through her eyes with deep pain, suffering, and guilt. As she smiled graciously, I wished that I could unsay the words.
When I was in high school, many years earlier, I clearly remember one of my classmates in social studies class discussing Down’s Syndrome saying that she would have an abortion. “Why?” we asked, “They might not have normal lives, but they can be happy.” Then, she told us the experience of taking care of her little brother already 4 years old that required 24-hour care, bed-ridden with diapers, and not able to communicate. Her brother had other severe complications of birth beyond the usual features of Down’s syndrome.
There is such a disparity to discuss Down’s syndrome in general and leave behind the individual stories. The stories are so varied and rich with both pain and joy… and parents that love, no matter what.
Watch the TED talk “Love, no matter what” by Andrew Solomon
With deep presence and compassion, he presents the stories of parents and their children. The search for cure, the wish that they might never have been born, the struggle to accept, the fight to overcome challenges, the pain of meeting failure, and the love they have, no matter what.
Resources
- Far From the Tree: Parents, Children and the Search for Identity by Andrew Solomon
- Far from the Tree: (Young Adult Edition) How Children and Their Parents Learn to Accept One Another . . . Our Differences Unite Us by Laurie Calkhoven (Adapter), Andrew Solomon (Author)
Wow, perspective.