Forever Parents

Child rearing follows a pretty standard time line: You raise your kids, they leave home and, although you'll always feel protective of them, they're in charge of their own lives. But for the parents of disabled children, this may never be the case. Three mothers talked to us about what life is like when the job of parenting never ends.
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Charlotte and Gary Hall

Denver, Colorado
Jordan (left), 19, has autism
Julian, 22, has cerebral palsy

Julian was 9 months old when he got sick. At first I thought he was teething. But when he started running a fever and acting lethargic, I took him to the hospital just to be safe. He had a seizure and a stroke, then slipped into a coma right there in the ER.

The news from the doctors was horrible: My little boy had chickenpox, which caused a brain inflammation called viral encephalitis. Julian survived, thank God, but he developed cerebral palsy as a result of all the damage to his brain. He was released from the hospital just before his first birthday, but I felt like I was bringing home a newborn. He couldn't even hold his head up.

When I had Jordan two and a half years later, I could sense something wasn't right when I tried to breastfeed him. He didn't make eye contact, and he didn't like to be held. It took doctors three years to diagnose Jordan with a learning disability; when he was 8, doctors told us he had autism.

My boys have grown into fine young men. They still live with us, and they probably always will. They have the same IQ -- 65 -- and they both have epilepsy, but their challenges are different. Julian has no use of his right arm and limited use of his right leg, whereas Jordan's issues are social. He'll blurt out whatever he's thinking sometimes, and he doesn't understand things like personal space.

When the boys were young, Gary and I felt isolated from other parents, who didn't seem comfortable approaching us, and we didn't know how to connect with them. That changed nine years ago, when I signed up Julian and Jordan for Special Olympics. I can't say enough about how much the program has helped them. Playing sports and making new friends really boosted their self-esteem. And Gary and I finally had a network of parents to turn to for advice and insight.

Every time the two of us go out without the boys, we worry about something happening to us even though we have a will leaving guardianship of them to my aunt and uncle. Another issue for us is that we won't be able to enjoy retirement the way most people can; it's as though we'll have young children for the rest of our lives.

Whatever challenges come our way, we can face them. Julian was diagnosed with non-Hodgkin's lymphoma four years ago (he's in remission now). When I explained cancer to him, he shrugged; he was just happy he'd still be able to play basketball. Everything rolls off his back; that's also true for Jordan. I think that's partly due to our faith. Church has been our anchor.

The boys will always have to rely on us, but that's not such a bad thing. Because they aren't like other kids, they spend more time with us, so we're much closer than the average family. That's a real blessing, I think.

Continued on page 2:  Cheryl and Rudy Foschi

 

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