June 28, 2006 4:02 PM
Entertaining Angels
Here is my column from this week's Loudoun Times-Mirror. If you live in Loudoun, you can find my column on page A2 every other week. It's called Close to Home, and it's been running for almost three years. This week's was stimulated by the rejection from neighborhood boys (and parents) recently experienced by my son Jonny - who has Down syndrome [for the long story read here, and here, plus a few entries after you can find in my archives or by using my personal Google with Jonny's name]. As I explained in The Purpose of My Blog and My Writing, the specific events of a writer's life stimulate a thought process that results in something that eventually reflects the bigger picture. For the writers who read my blog, you can see that process at work - and the end result, which has a more universal message:
Entertaining AngelsMy son Jonny has a little extra. A little extra enthusiasm, innocence and charm. Since he has Down syndrome, it’s hard to say how much of it is because of the extra chromosome and how much is because he’s Jonny. But as he enters adolescence I’m learning not everyone is willing to look beyond his genetic condition to find out who Jonny really is.
Fortunately, Jonny lives in a time and place where he received a warm welcome and a great start. Without surgery, he would not have survived. The hands that mended his brokenness were those of a world-class surgeon, yet such a gracious and humble man I still cry remembering how he cared for my brokenness too.
It hasn’t always been this way. As recently as 1982 in a famous court case a Bloomington, Indiana couple was granted the right to refuse similar surgery for their Down syndrome daughter though six families had offered to adopt her. It took seven days for Baby Doe to die.
For decades there has been a waiting list to adopt such babies. Since Jonny’s birth, we have been fortunate to adopt three ourselves – which has brought more than a little extra into our lives.
Two are from cultures where they would not have been accepted or educated at all – unheard of now in our country, which has progressed in the past forty-some years from doctors advising shell-shocked parents to send their baby straight to an institution to a strong commitment to educate and mainstream – whenever and wherever possible – differently-abled children into the schools and community.
Believe me, I count my blessings. As well as Jonny’s and his brothers. Their teachers and doctors have been outstanding. People are generally kind and caring. We’re fortunate to live in a community where a young woman with Down syndrome can become Homecoming Queen – as Lauren Welch did at Loudoun Valley High in 2005.
But try this: Google the words Down syndrome homecoming queen (or king) and you’ll be surprised how many young people’s hearts have been expanded by the special role such kids have played in their lives.
Still there are moments of rejection. I remember a young bagger at a California Safeway named Lily who shared Jonny’s little extra. When Jonny was a baby I would purposely stand in her line even if it was the longest. I remember my horror one day when another customer spoke to her as though she were subhuman, as though she had no feelings.
Was that the future that awaited my son?
Fast forward fourteen years. I’m finding the answer to that question is yes and no. And my older children have discovered as well that their much-adored younger siblings are like a litmus test of the heart as they can bring out the best and the worst in people that come into our lives.
Let’s put it this way: with four kids with Down syndrome, our family doesn’t get invited anywhere very often. My daughter’s once-close friend explained that her parents couldn’t ask us to a multi-family bonfire because of her brothers, who might burn themselves. We’ve seen Jonny rudely turned away the first time he tried to join in shooting hoops with schoolmates in the neighborhood – which the parents justified because, well, what if he tried to come over every day? For the last two years there have been reports of some cruel moments at school and on the bus.
Understandably, these things make every member of our family sad, and yet we know that the benefits of sharing our lives with Jonny and his younger brothers make us the truly fortunate ones – along with those who’ve also opened their hearts to show our sons the kindness every human being deserves.
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Note to parents: Do you know where your kids are on this issue – I mean, really? Watch Radio with them – an excellent movie on a community’s response to a mentally-challenged young man (portrayed brilliantly by Cuba Gooding, Jr.) and a wonderful springboard for family discussion.
Tripp and Barbara Curtis received the 2004 Congressional Angels in Adoption Award.
Posted in Disabilities, Down syndrome, Loudoun County | Permalink
Comments
Hello Barbara! Entertaining angels unawares goes both ways, doesn't it? I can tell that your Jonny is a precious blessing to you.
I found your blog through largerfamilies.com this morning and I can't wait to read on down. I have only 11 children, so, of course, I must inquire on whether things really are cheaper by the dozen! ;~)
Posted by: bernadette | June 28, 2006 5:01 PM
*differently-abled children*
I really like that - I've never felt comfortable with dis-abled, but didn't know what word to use instead. Thank you for this. It's easy to see that often a seeming lack of ability in one area provides for a surplus in another. What a blessing to have an abundance of enthusiasm, innocence and charm.
Posted by: Kelli | June 28, 2006 6:10 PM
