Joy and hope

“I decided I’m just going to make his life as good as I can for as long as I can.”

“I’m showing him that, hey, we’re in a wheelchair but we can do things. Have van, will travel. We’re still going to go places, do things. It’s important that he realizes that.”

“I don’t feel that I’m burdened with it. He’s a blessing.”

“I’ve really learned to be patient. He brings a lot of joy to my life.”

Support system

“Share your fears and frustrations. You’re so used to doing it on your own, you forget you can pick up the phone and ask somebody, ‘Hey, I need somebody to come over today.’”

“My friends have pitched in wherever they can, whenever I need a break, or just little things they’ve done for me.”

“Do not go into a shell. Get to know everybody at your kid’s school. It’s good to know that everybody’s aware of your child.”

“You may not have father and mother and siblings, but you build a family through MDA and through the people that get attached.“

Coping

“A lot of people ask me, how do you do it? I look up at the sky and say, I pray every day, just let me get through this day. There’s no magic pill. I just get through the day.”

When you feel overwhelmed, “Sit down and have a good old boo-hoo. Get it all out. Then pick yourself up and then you go again.”

“I’m going to the gym to build myself up because it is getting harder now that he’s grown, even just rolling him.”

The future

“I’m trying to save enough money to be able to hire help when the time does come that I need it, because I know I can’t do it myself.”

“You can pretty much take the effects of the disease in stride because the kids will.”

“Don’t deal with the future. Deal with now. Take it one day at a time. If you have to, take it an hour at a time.”

Adapted from Family Matters: Going It Alone, Quest, October 2000, © 2000, Muscular Dystrophy Association Inc.