Just Anna

So, I have been reading posts and bogs, here and there, on the topic of special needs kids and their families. I liked this photo:

 
I have one of those--a child with Down Syndrome who survived Roe v Wade. Although I don't see myself marching on Washington, DC anytime soon, Anna certainly changed mymind about Roe v Wade. When I was in college, I thought abortion was morally wrong, but I wasn't sure it should be illegal. Now I wish there were some greater measure of protection for babies with Down Syndrome. I had an amazing time a few weeks ago with some 17- and 18-year-olds from Catholic secondary schools around Durham. Their utter disbelief at this statistic was beautiful. And, when confronted with the question whether they would hope for a baby with fix-able heart defect with a strong probability of Down Syndrome or a baby with a heart defect that proved fatal in more than 50% of cases, they overwhelmingly chose the former. (It took me several weeks to get there in the summer of 2001.) One young woman explained her reasoning: the person with the extra chromosome is still a person, after all. She should have a chance to live.
 
A couple of blog posts I read suggested that special needs parents often feel alone. Thinking back over the last decade, I see times when that described my situation perfectly. Dealing with problems with nursing early on, the first heart surgery at 4 months of age, delays in development and ongoing health challenges set us apart somewhat. When people said, 'I don't know how you do it,' my response was (and is): I never knew anything else; she was our first child, and we just did what we needed to do, like every other parent! I can't explain why I feel less alone now--whether it is knowing that I know plenty of people (mostly friends from school, whom I keep up with now on facebook) who are walking a very similar path, or the parish and community I have here in Durham. (It's probably both those things, and a double measure of grace.) For the honesty of all those who post about their struggles, however obliquely, I am grateful. I know I am not alone.
 
 
It's true that we are tired--though that is as much to do with a typically developing 1-year-old who doesn't sleep at night as it is to do with the challenges of raising a special needs child. Ditto for the cost of child care. Life is complicated, busy, expensive and exhausting, but it is good. No doubt about that. In one of the blog posts by Maria Lin (click the link above), she praises cultures that regard special needs children as a blessing, here to teach more than to learn. Anna has a lot to learn, to be sure--I expect her to learn to read, tie her shoes and count to 100, among other things, when she's ready. But she's definitely teaching us--me especially--to be patient, and to appreciate the right things.
 
But I don't normally think about that too much (grateful as I am for having been reminded); I just see Anna.