March 26, 2007 8:19 AM
How having a child with Down syndrome changed the way I see the world
This has been published elsewhere, but thought you might enjoy seeing it here:
Entertaining Angels
Fourteen years ago the world changed for me when Tripp and I had our eighth child, Jonny. When I saw my son’s sweet almond-shaped eyes, I knew life would never be the same - but somehow indescribably, immeasurably better.
On the other side of the looking glass, Jonathan and I embarked on many new adventures. In our weekly Easter Seals play group, we sang songs I’d been singing with my seven other kids for years, only now we used sign language as well. I gazed around the circle at the other mother/infant pairs, knowing I was seeing things fresh and new—not as I would have seen them before Jonny.
There was feisty, one-eyed Christopher, whose head was heavy, swollen and asymmetrical. And bossy one-year old Anna, who resembled a twelve pound wrinkled old woman. Gabriella was blind but oh-so-curious and Sam and Jenny, though they both had cerebral palsy, were no more alike than any two kids with brown eyes.
Their mothers’ lives had been irrevocably changed by the birth of the child that brought them here. All were in some stage of coping.
In our discussion group, Christopher’s mother sobbed. Her husband was becoming more and more withdrawn. She knew the statistics: eighty percent of marriages end in divorce following the birth of a disabled child. But she had a more immediate problem: she couldn’t bear to take her baby anywhere and see the horror in people’s eyes when they saw her first son.
Anna’s mom felt the same. She struggled with whether or not to get pregnant again. The genetic counselors were not sure whether Anna’s disorder was chromosomal.
Jenny’s mother dealt with guilt; she wondered who to sue. Her home birth had gone awry. Delays getting to the hospital compounded the problem and now her daughter’s future would be different from what it might have been.For two years we met, supporting each other through our children’s operations, subsequent pregnancies (resulting in three healthy babies in the group), and stresses in our marriages. We rejoiced with those who rejoiced and mourned with those who mourn.
I was blessed and broadened by these relationships - relationships forged simply because Jonny was in my life. And truly all the members of our family have been blessed and broadened. Jonny was only five or so when Big Brother Matt said, "Wouldn't it be wonderful if every family had a kid with Down syndrome?"
Wouldn't it, indeed? If everyone understood their value, instead of being feared they'd be eagerly welcomed into their fortunate families.
Which is why since Jonny's birth I've done my best to eliminate the terrible fear our culture instills in our hearts of having a baby who is somehow regarded as "less than." The greatest gift Jonny gave me was that I could look around the circle and see all those children as beautiful - a small glimpse of how our Heavenly Father sees all of us in spite of our flaws and infirmities.
An email recently I received from a mother who reads my blog – a mother expecting her fourth child – made my heart sing:
After reading your blog over the past 3 months, I am not as concerned about my baby having a disability!And so Jonny’s influence has grown, extending beyond his own family. What a gift I have been given! A daily reminder:
Be not forgetful to entertain strangers; for thereby some have entertained angels unawares. Hebrews 13:1b-2
I lived most of my life as a person with limited capacity. But God gave me an angel to entertain—to broaden my perspective and enlarge my heart. Through Jonny, He showed me how little He cares about our intelligence and physical appearance, how much more He cares about the things we “normal” people will never be able to measure.
Looking back, I know that it must have been me God saw as disabled. But where I was blind, I now can see.
You can find a bunch of Jonny pictures at my website (which reminds me I need to update them - his 15th birthday is coming up Saturday!).
Also, I'm collecting photos of kids with Down syndrome a special Mother's Day Photo Album - see announcement following this post.
Posted in Down syndrome, Family | Permalink
Comments
what great pics of Johnny. I loved them.
Posted by: paigeu | March 26, 2007 10:59 AM
I have 'visited' here a couple times before, but just wanted to stop for a little while longer tonight, because anything about DS gets my undivided attention! We have three little boys, our middle one is 4 1/2 and has DS. We are passionately in love with him, as are the many people whose lives he touches. I, also, have often wondered if we might be 'entertaining an angel unawares', and it is certainly true that, as you say, "life (...) is somehow indescribably, immeasurably better" with him a part of our family unit. We are so grateful for him, and I am almost sure that we will have more children with DS in our lives, one day.
But for now, we savour every minute of every day that we have with Thomas, as we know he is God's gift to us, and an immeasurable blessing.
Posted by: mrs wibbs | March 26, 2007 5:52 PM
