Recently, I was listening to a Catholic radio show–Al Kresta’s “Things That Matter Most”–and heard a disturbing story about euthanasia in Europe. Apparently, in Belgium childhood assisted suicide is legal. That definitely got my attention, but what really woke me up was learning that a 5-year-old with muscular dystrophy was euthanized.
I was completely perturbed and enraged. The reason this seemed so sad to me is that five years old was my age when I was diagnosed with Duchenne Muscular Dystrophy. The doctor basically gave my parents the worst-case scenario on the progression of the illness. When they receive a diagnosis like this, parents are already emotional basket cases–and so trusting in the doctors that I could see how a family might be persuaded to “compassionately” end their suffering child’s life. That made me reflect on the fact of my life. What would my family be like if my parents had misguidedly opted to end it prematurely? They would not have had to alter their lifestyle to care for a sick child, but what message would they be sending to my younger brother when he found out that they had deliberately terminated my life prematurely to spare me the possibility of future suffering? It would be like telling him “If you encounter a terminal illness, it is better to give up than fight on and try to make the most of every day God has given you.”
Had this happened, I don’t believe my four younger siblings would be here. I believe that my illness changed our family dynamic for the better. Why? For one thing, it forced us to realize that we needed each other. Before my diagnosis, my mom was considering working full-time. But when she found out I had muscular dystrophy, she put off the idea of working to care for me.
Secondly, the doctors advised my parents not to have any more children for fear that any subsequent child might have DMD. According to statistics, there is a 50 percent chance of a male child’s having the condition. Luckily, my firstborn brother, who was about two years old when I was diagnosed, was tested and found to not have DMD. My mom was upset and considered getting sterilized, but was persuaded otherwise by a Catholic priest who gently told her, “You know what the right thing to do is.”
After working at a crisis pregnancy center, Mom decided to take a leap of faith and have another child. That child, Mary Faith, born in 1986, is now a physical therapist in Texas. Three years later, along came Rachel, who is now married with four beautiful children. Then came Anna, who is now a registered nurse. Last of all came Mike.
Mike seemed, at first, to be healthy. When, after showing signs of deteriorating health, he received his own DMD diagnosis, it hit me like a ton of bricks. I thought to myself, “But, Lord, I prayed for a healthy brother whom I would help grow into a self-reliant adult!” As the years went by, I realized my purpose is to mentor him by example and lift him up when he is down. I try to let him know he is not alone–that he has God, who sees his suffering, but allows it to draw him and others closer to Himself.
We will never fully comprehend in this life how much good has come from accepting and caring for children with terminal illnesses. When we offer this kind of acceptance and care, we affirm the ability of an individual to overcome major challenges and, in so doing, to inspire others. When we act in a way contrary to someone’s innate dignity and value, we deny society an opportunity to become more compassionate and selfless. After all, a society will ultimately be judged on how well it treats the weak and vulnerable.
Mr. Grimberg, an enthusiastic guest writer for Divine Mercy Care, has spent most of his life battling the effects of muscular dystrophy. We’re thankful for his faithful support of DMC and for his articulateness on pro-life issues