Today is World Down Syndrome Day, chosen for the numerical date. People with Down syndrome (DS) have three instead of two copies of their twenty-first chromosome, hence "3-21". The past four years I have spent March 21st, and many other days, reflecting on what Down syndrome has meant to me...
Some parents report that after hearing about their child's diagnosis of Down syndrome, they start to see people with DS everywhere. My experience was exactly the opposite...part of my grieving process upon learning Tiny Man would be born with DS was to look around and marvel at the number of "NORMAL" people in the world...it was so shocking to me that most of the time, babies are born so typically, so normally.
One of the many reasons I am so thankful we found out about Tiny Man's DS before his birth is because of this grieving period. Hubby and I had time to deal with our feelings regarding DS before the baby came. Given all the health issues and decisions that had to be confronted after he was born, I realize now that if we hadn't learned of the DS ahead of time, the amount of information would have been completely overwhelming.
Given all that we had to deal with, health-wise, after Tiny Man was born, the Down syndrome didn't seem to be a big deal. When we really started to see the effects on his development, we were just so glad that he was still with us...it didn't ever occur to me to resent the fact that he was developing more slowly or that he didn't do the things that other kids did. His health issues always overshadowed his developmental issues. We say all the time that we just did what he needed us to do, and we would have done that forever. After all, he made it so easy for us to care for him and gave us such rewards in the process.
Since Tiny Man's death, Down syndrome continues to be a big part of my life. Some of my closest friends have children with DS, and I'm so thankful that I get to be a part of the lives of these kids. I'm thankful that Toast has always known friends with DS, and hopefully always will. I'm thankful that to him, these kids aren't different...they are just his friends.
Many parents of children with Down syndrome say that their kids have taught them to look at the world differently, and I agree...but I continue to be reminded of this by children other than my own. Down syndrome and my involvement in this community reminds me that people matter, not labels and not diagnoses. It's made me aware of a larger cause, a larger community, and how people can change attitudes in others when they don't intend to.
So happy World Down Syndrome day. I have to admit that I didn't wake up today thinking about it, much like I didn't look at Tiny man and see Down syndrome every time. I try to be aware and thankful of these things every day, much like I loved, and continue to love, my son every day; in spite of (and because of) his differences. That? That's what I'm most thankful for...what some see as abnormal is so completely normal to me. Thanks for that.