|The Rice Family
We’re the parents of three children, ages 8, 6 and 5. Chris has had ALS for three years, and the biggest challenge for us is explaining this disease to our kids. We want to protect their minds and hearts. We want to keep them from being fearful or angry.
How? After much thought, we do what many others do… try to balance the reality of ALS with hope:
B — Believe in yourself …. Trust yourself when it comes to speaking with them and reading their emotions. Trust your instinct to get help when needed and listen to others in your child’s life. In my family, our children have opened up to their friends’ parents or teachers. Communication with the other people in the lives of our children allows us insight into their thoughts about Chris’ ALS.
A — Accept before you expect your children to accept. For example, we don’t feel the need to talk about wheelchairs with the kids before Chris has a problem walking.
L — Live your life to the fullest! You have an opportunity to teach your children the importance of grace through trials. Everyone faces hard times, and we have to learn to move through them. It’s OK for us to have moments when we’re sad, angry, upset or frustrated, but our kids need to see the opposite more often — happiness, peace, enjoyment and calm. Magnify your life, not your ALS.
A — Attitudes are contagious. Keep your own attitude healthy and positive. Fill your mind with things that inspire you… music, nature, inspirational speakers, sermons, Bible verses, work, children… whatever it may be. Where the mind goes, the body follows. Let’s keep ours in a healthy place!
N — Never lose hope. If you want your kids to be hopeful, you have to show them how. Being involved with other ALS families, through clinic and MDA events, helps us keep hope. We’re really not alone in this battle, and it’s healthy for our kids to see that.
C — Cues come from our kids. They usually need small doses of information at a time. Our 6-year-old, Mason, asked why Daddy’s voice wasn’t getting better since he’d been praying for this during the past two years. We took the opportunity to say, “Some people with ALS can’t speak at all. God has blessed Daddy because he’s still talking so well.”
E — Experts are available. Child psychologists, family counselors, books, church counselors and other resources are meant to help. If your kids appear to be struggling, accept help from an expert.
Chris and Reda Rice of Houston are co-chairs of MDA's ALS Division.