Burdens and Blessings

I have a new post at BLOOM: Parenting Children with Disabilities.

I'm printing it here in full, although I also encourage you to click over to BLOOM when you're done reading and scroll through the content there. Anyway, here's the post, which should make sense of the photo, taken when Penny was in the Emergency Room at thirteen-months old:

"Penny's tough."

He said it because he wanted to support us. Peter and I were on vacation with close friends, and we had asked for parenting advice. That week, Penny just hadn't been able to keep her "listening ears" on. She hadn't "controlled her hands." She wriggled and squirmed and ran away. She dumped milk on the counter. She refused to use the potty. She even pulled our friends' daughter's hair. So with the kids in bed, we were sitting at dinner bemoaning our lot as parents, wondering what we were doing wrong.

So when our friend said, "Penny's tough," he meant it as a consolation. He was encouraging us: We were doing our best. We shouldn't be beating ourselves up. But I felt a little sick hearing those two words uttered from the mouth of the parent of three typically-developing children. I felt as though I had betrayed Penny, even as though I had betrayed kids with special needs in general.

Most of what I say to friends or write about, when it comes to Penny in particular and Down syndrome in general, is positive. Genuinely positive. When I hear that a baby has been born with Down syndrome, my gut reaction is, "Congratulations!" I want to get the word out that children with special needs really are special, as in, valuable, and deserving our attention and resources and care. That's why we participate in a program through a local medical school and have doctors-in-training over for dinner. That's why I write about the love and laughter in our family. I want to promote an ethic of inclusion. I want the rest of the world to know the goodness, the blessing, the joy, of welcoming children as they are given to us.

But all my positive stories and genuine joy in our child sometimes means I have a hard time talking about the hard stuff. I have a hard time admitting that life with a child with special needs can, indeed, be tough. That potty-training has taken two years and counting. That I wish I didn't know the route to the Children's Hospital of Philadelphia by heart. That there was a night last spring when Penny could have died of dehydration from a stomach bug. That I hear people making comments about where their children will go to school or who they will marry or even how many grandkids they will have, and I sometimes feel sad, not knowing what possibilities are out there for our daughter. If I talk about those thoughts and experiences and feelings, I'm afraid I will only perpetuate an impression that children with Down syndrome (and other disabilities) are burdens. Or that somehow, Penny's existence is less than complete. That somehow, it is sad that she has Down syndrome. Or sad that she is our daughter.

I read a few years back that there's a difference between pity and compassion. When people take pity, it's a distancing mechanism. It's looking in from the outside and saying (whether by word or action): "I'm sorry for what you're going through, and I'm so glad that I'm not you." But compassion, a word whose root means "to suffer with," is looking in from the outside and saying, "I'm sorry for what you're going through. How can I enter into this hard place with you?" I don't want people's pity, and yet I wonder how often I have, in trying to avoid pity, instead closed myself off to compassion.

We had a medical school student over for dinner last week. He spent 30 minutes alone with Penny. I could hear her giggling and instructing him "Help me draw a playground!" and showing him how she wrote her name and reading books to him.

"How do you think it will impact William to have a sister with Down syndrome?" the student asked me, after she had gone to bed.

I talked for a while about the blessing I thought Penny's life would be for him, how she would show him that character counts more than achievement, that value in life comes from who we are not what we do. The med student then asked, "Has it been harder having a child with special needs than a typically-developing child?"

I took the risk. "Well, yes and no. William cried for the first six months of his life, whereas Penny slept through the night at seven weeks. But with Penny, we did have therapy four times a week for about a year, and there are more doctors' visits, and I do find myself worrying about whether she will have friends when she gets older." As soon as I said it, I wondered, again, if I had betrayed her.

But he responded, "You know, I look around your house, and having spent time with your kids, I think this is a life I could aspire to. And I mean all of it, including having a child with a disability. Somehow it seems to make your life even better."

He's right. Somehow the hard stuff and the joy are related to each other, and together they are leading us more and more into a life of gratitude. Talking with honesty about it all doesn't betray Penny, any more than it betrays colicky babies to talk about William's first few months of life. And although I think parents of children with special needs do experience struggles of a more intense nature than most parents of typically-developing kids, all parents need a safe place to admit the stuff that's been hard lately. So I'm going to try to create that space, to talk about the burdens and the blessings of our life. To trust in the compassion of our friends and family. To trust that what's 'hard' is part of life, and a part of love.

Again, please visit BLOOM for more posts and stories, particularly for parents of children with disabilities.

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