Life has knocked the breath out of me several times, yet I find the will every day to hold on to hope: hope for my children, that someday, by some miracle, they will both become successful, functioning adults.
The first time I had the wind knocked out of me was just before Thanksgiving, 2007 when my four-year-old son was diagnosed with Duchenne muscular dystrophy (DMD). I’ll never forget how I felt when that call came in.
DMD is a genetic muscle disease that results in the progressive loss of strength. It affects about 1 in every 3,500 live male births. The muscle cells are easily damaged, and most children diagnosed with it are confined to a wheelchair by their early teens, eventually losing all muscle function. Boys with DMD typically live until their late twenties, but each case is different. Duchenne is fatal, and there is currently no cure.
I find myself feeling guilty because, at 11 years old, my son is still walking. Many boys his age are already wheelchair-bound and have lost most of their independence. What is even more heartbreaking to me is that my son also has some emotional and behavioral problems that often make enjoying the time I have with him nearly impossible, and that, in turn, often turns to a deeper feeling of guilt. I try to treat him as I would any other child and expect him to be respectful and strive to achieve greatness in spite of his disease. I still expect homework and chores around the house to be done. I expect him to be the independent 11-year-old that most boys his age are while he can be.
It look a long time to reach that point because initially, after receiving the phone call, I lost all hope that he would have a somewhat normal life. I still feel that I am just waiting for the downhill roll to begin. I fear that, at any moment, I will again have the wind knocked out of me.
The second time life knocked the breath out of me was when my 14-year-old daughter was diagnosed with a mental disability. I had begun to suspect something was up with her, but upon initially mentioning it to her pediatrician, I was told that she would grow out of it. She never grew out of it, and it was clear when she began school that she was falling significantly behind her peers. Some time passed, and after my son’s diagnosis, we had her evaluated. The psychologist referred to her condition as a mild mental disability.
Again, all of my hopes dreams for my precious child flew right out of the window. I don’t know at this point exactly how far she will develop, or if she’ll ever be a self-sufficient, functioning adult. It often feels like I have a toddler with the raging hormones of a teenager.
I find myself constantly struggling with frustration and anger as life seems to relentlessly remind me of the fact that my children aren’t like other children. I am on an emotional roller coaster and am likely to spontaneously combust into tears at any given moment. I live in fear of the “beginning of the end,” and that someday I may not be able to hold on to hope.
It is certain that, at some point, life will again knock the wind out of me, but until then I will remain strong for my kids and hold onto my hope with every ounce of strength that I have.