August 30, 2005 9:27 AM
Entertaining Angels
Brian's comment reminded me how much the world changed for me thirteen years ago when Tripp and I had our eighth child, Jonny. When I saw Jonny's 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 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 Her husband was becoming more and more withdrawn.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.
And 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.
That's why all these years I've done my best to eliminate the terrible fear our culture instills in our hears 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 I received from a mother expecting Number Four this summer made my heart sing:
P.S.S. After reading your blog over the past 3 months, I am not as concerned about my baby having a disability!
Isn't that cool?
I think of it in terms of Hebrews 13:1b-2: Be not forgetful to entertain strangers; for thereby some have entertained angels unawares.
I lived most of my life as a person with limited capacity. 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.
Posted in Disabilities | Permalink
Comments
Barbara,
This is a great post. My mind has been levered open over the past eight years, by being forced into meeting parents of children with challenges. It has been tremendously enriching. There's an alternative universe out there in the world of disability.
Posted by: Julana | August 30, 2005 10:59 AM
I just wanted to say that I was always worried about having a baby with Down Syndrome. (Not really sure why besides that I am a worrier) After reading your site and getting to know your family I dont cringe when the thought pops into my head anymore. Thanks for the encouragement.
Julie
Posted by: Julie | August 30, 2005 12:36 PM
What a beautiful post. I'm just all watery now. This is exactly how I feel about my Henry - so amazed & thankful by his presence in our lives. So blown away by what God has chosen to show us through his life. How deeply & profoundly blessed I am because he exists. I cannot imagine my life without him now. I now look at other children with special needs or who are differently abled & I am immediately drawn to them - to include them, to welcome them, to tell them how neat they are. And I have an immediate, inexplicable bond with their mothers. We look at each other & we just know. We know what it's like to have to schedule life around 6 therapies a week. To have people look at us funny when they hear our non-walking child is almost 2. To weather pitying looks from passers-by.
But we also know the joy of a child whose love pours out like rain. The rejoicing when a milestone is reached that "normal" parents take for granted. The gut-wrenching love that accompanies that first "Mommy" or "I love you" or even a wave. I would never go back. Not for anything.
Posted by: Christy | August 30, 2005 12:48 PM
This really struck a chord with me. One of my nephews has cerebral palsy. Our extended family has gone through a series of nightmares as doctors tried to find a diagnosis and kept coming up with horrid syndromes with bleak prognoses. Finding out he has cerebral palsy is such a huge relief!
At the age of three, he has just learned to walk, somewhat limitedly, but much better than therapists and doctors had dared hope for at this time.
I think he's cute as a button, especially since he has the most sunny personality (when he isn't being frustrated by sensory integration problems). However, he has a droopy eyelid problem and some weakness on one side of his face. Before his surgery (for the eye) he used to look kind of odd. It's amazing how love sees past all that.
This child has a way of completely capturing people's hearts --- and not just his adoring extending family. When I've carried him around places a few times, he was so engaging that even strangers would end up making a big huge fuss over him.
I can't imagine our family without him. He has brought us such hilarity. I don't think I'll ever forget the sight of him racing around the house with his little walker, looking like some sort of crazed, tiny old man. It is so much fun to celebrate his every new accomplishment, especially since he gets so excited when he masters some feat.
Some people might look at him and think of all the work that goes into taking care of him. Because of his feeding issues, a big part of my sister-in-law's life revolves around preparing his meals and feeding him. (She jokes that she and my mother should go into the gourmet baby food business, since they have invented all sorts of special meals.) Life is also full of trips to therapists, doctors, special teachers, etc., etc., all while taking care of an older child and two younger ones. It is overwhelming and not a task for the faint of heart.
But I'm sure my younger brother and his wife wouldn't trade their children for all the riches in the world!
Posted by: Rebecca | August 30, 2005 1:10 PM
