From the News page: Mothers’ experience

by Petr Kratochvil, photo courtesy of www.publicdomainpictures.net

by Petr Kratochvil, photo courtesy of www.publicdomainpictures.net

Over at the News page, today’s entries feature the lessons learned by moms raising their children with Down syndrome.

  • Kelle Hampton celebrates her daughter turning four:

I’ve trained to be a Ninja Warrior against Future Fear, knowing that with every challenge we’ll ever be given in life, our job will never require more of us than to face one day at a time. Thinking about all the what-ifs for Nella at once—if she’ll be accepted, if she’ll get made fun of, if she’ll be sad or feel different, if she’ll be healthy, if she’ll find employment, if she’ll be taken care of after we’re gone—can feel like having the wind knocked out of me. But I’ll never have to face all of those things ever at once, so why worry about them all at once. One day at a time. We have more than what it takes to love and support our children for just today. And I can wake up and say that again tomorrow and the next day and the next day after that.

  • A mom attends a book club reading Expecting Adam, and listens as the attendees predict whether they would terminate after a prenatal Down syndrome diagnosis, even after she tells them her daughter has Down syndrome.
  • A mom describes finding out that her son has not only Down syndrome, but a serious heart condition, in a very wonderful way:

We had expected this to be the case, since learning that Charles’ particular defect was so common in children with Down syndrome, but it was another blow to us.  So much “bad” news about a kid who would, over the next 15 years, enrich our lives beyond measure.  But we didn’t know that, yet.

* * *

When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy.  I had never been more happy to meet another human being in my life.  After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.

Greg likes people for themselves, just as they are. Each one of his classmates was important to him. That’s what the other students were responding to. Everyone wants to be loved that way.

  •  A mom shares how a “bless your heart” sentiment actually misses out on a more important conversation:

I’m like a normal person. In fact, I am a normal person. And so is my daughter. She’s not a burden. She’s a child, offering the same kinds of joys and irritations that any child offers. Because she has Down syndrome, she and I do experience some different challenges. In some ways I do more work than the parents of typical kids (assuming that the typical kids don’t dramatically resist sleep, bully their friends, end up in juvenile detention, have some medical condition, etc. — stuff that of course we can’t predict). When you have a kid with Down syndrome, you have to do early intervention therapies. You have to become an advocate in the school system. You have to work to teach the child things that are intuitively obvious to lots of other kids, or that other kids can hear once and incorporate into their repertoires.

But this doesn’t require blessing my heart. A more interesting conversation would be if they asked me if Maybelle’s in preschool (yes), or if I have a job (yes), or how much she likes dance class (a powerful, intense yes). They could challenge their own lack of knowledge, and I’m happy to share what our lives are like.

At the parents’ gathering, I said to the other mother, “It’s actually not that hard to raise Maybelle. She’s a pretty easy kid to be around. I have a good time with her. Down syndrome isn’t as bad as you think.”

“Huh,” she said. “I wouldn’t have guessed that.”

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