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Letting Go and Living It Up

by Linda Zani Thomas

 

Editor's Note: This brief glimpse into an ordinary family event as seen by the mother of a blind, multiply disabled child illustrates more fully what Virginia Richardson tells us in the article 'The Journey' on page 34 about coming to terms with a childs disablities.

 

Being severely multiply handicapped doesn't mean you can't be the life of the party.

As parents of mutlipy handicapped kids, we sometimes feel cheated of the simple pleasures of parenthood. You know, seeing your child score a soccer goal, watching your child dance the solo at the dance recital, or beaming with pride when he or she brings home the straight A report card. If you're nodding in agreement, take a closer look at those scenarios aren't they all about US and not about THEM?

I think most severely multiply handicapped kids (especially those like mine with profound cognitive delays) don't realize they're missing out on anything and have no idea what we're so upset about. This is a story about letting go and living it up with our special kids.

My daughter just turned nine chronologically. Mentally, she's just about three years old. I never had a real birthday party for her before this year because, let's face it, what one- or two-year-old really enjoys or understands his or her birthday?

Emotionally, I felt she would finally enjoy her day, so I threw together an old fashioned neighborhood outdoor party. What, with real neighborhood kids? Of course! Six kids aged 6 to 9 were thrilled to attend and had a great time singing Happy Birthday and running around the yard. Marisa, although blind and confined to a wheelchair with cerebral palsy, clapped and laughed and listened intently.

Three of the children would have been in Marisa's grade if she hadn't been handicapped, and one girl's class got together and sent individual hand made cards to her. Their generous spirit brought tears to my eyes.

And how did I feel? Like I threw the perfect party, like I had a real parent moment. And Marisa? Serene and special.

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