Pittsburgh Parent magazine profiles three families whose children have disabilities.

From the introduction:

Any place where families gather, parents will at one time or another hear murmurings of a child with disabilities. Some parents feel pity while others consider themselves lucky their children were born “perfect.” Some might change the subject, feeling nothing at all because unless it’s their child or someone close to them, it can be hard to imagine the twist of emotions involved. But, as the three families profiled here will attest, the “states of mind and emotion” they’ve experienced are often characterized by acceptance, simplicity and gratitude fueled by the opportunity to parent extraordinary children.

Represented here are children with Trisomy 13, Centronuclear Myopathy (CNM) and Down syndrome. Their families communicate messages of love and optimism. Here’s a quote from the mother of twins with CNM:

When asked what she wanted people to know about children with disabilities, Rosemary’s thoughts stretched beyond her own family. “I want other people to know they should do whatever they can to keep their kids alive, to get to a place where there’s top health care like Pittsburgh. If we’d been somewhere else the boys would have died. The disease is not bigger than you, even though it feels like it. We know how to treat symptoms, so treat them until they find a cure or a way to just live. Go with that.”

In terms of what Rosemary wants for the boys she grinned and shrugged, “I want them to have fun and eat. That’s it. Okay, that’s not only it, we love them the way they are, but I know there are bigger things in store for them.”

This entry was posted on Tuesday, February 5th, 2008 at 11:00 am and is filed under Down syndrome, families, genetics, personal stories. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post