The afternoon after his MRI, we got a call from the developmental pediatrician. His blood work showed elevated levels of creatine kinase (CK), which is released into the bloodstream when muscle is being damaged and can't repair itself. Elevated CK in a young boy almost always indicates some kind of muscular dystrophy. It was surreal to hear those words. It was, as my sister put it, almost literally unbelievable. From there it was a slow descent into the depths of painful despair. I didn't panic at first, but it didn't take long to discover that this was a horrifying diagnosis. When waiting for medical test results for a child, every parent just wants to know if the child will be OK. Even if he or she is not OK now, how certain can I be that he or she will in fact be OK eventually? Here was our answer. He was not OK, and would not ever be OK. I soon discerned that his symptoms were a good match for Duchenne muscular dystrophy, the most severe version of this incurable disease. Our son was being given a death sentence. Inside the body of our happy, healthy, bright little light of a child, his muscles were beginning to deteriorate. It was starting now in his legs and would put him in a wheel chair by age 12. It would then move on to his arms, then his diaphragm, making it progressively harder for him to breathe and eventually leading to dependence on a respirator, and finally it would stop his heart sometime in his twenties. In my mind's eye, I had an image of my beautiful boy standing in front of me, smiling gleefully, completely oblivious to a huge, hairy monster barreling down the road toward him. I could see the monster coming, but I was powerless to stop it. It would soon devour my child and there wasn't a thing I could do. My husband and I spent the first two weeks in a fog of despair that occasionally cleared for a sunbeam of denial to warm our sad bones for a short time, and then closed in again. I could barely even look at my son without feeling the clutch of panicked grief.
I can't speak for my husband, but after the second painful week of grieving the future life of our child, I began to realize that if I was going to make it through this, if WE were going to make it through this, we were going to have to keep our focus on the for-now healthy and able-bodied child in front of us. He is still the same kid he ever was. Nothing had changed for him, except that he suddenly had mopey, weepy, angry and unpredictable parents and had no idea why. We had to pull it together. He is almost five, and is still gaining strength, not losing it. We don't know when the decline will start in earnest, but it won't be overnight. He still has many, many good days ahead. And even when his symptoms worsen, he is still the same person he has always been. He is not his diagnosis. It doesn't own him, and it doesn't own us. I may not be able to stop the monster from eventually reaching us, but I am not going to sit back and watch or lie down and play dead as it overtakes my family, jaws snapping, claws scratching. I will stand up and make myself appear bigger, possibly even transform myself into a monster for a while, a formidable opponent. I will scream and yell and throw every single thing I can find at it. I will become a fire breathing dragon. I will kill it with kindness. I will do everything I can think of.
Slaying the beast starts with not letting it ruin our lives right now. Since his diagnosis, we have had appointments with two different pediatric neurologists who specialize in MD, which were hard, but also empowering. I have spent too much time researching the current status of drug trials and treatments in the process of development. I have read stories from other parents. I have felt the warm and steel-strong support of our extended families. We are not in this alone. There are thousands of people, even entire companies, fighting our monster alongside us.
I was afraid that finding this out right before the holidays was going to completely ruin them this year. This is a time for light and love, merriness and thankfulness, faith and hope. I didn't feel much of any of these things. How would I put on a brave, merry face for our families? How would I even drag myself out of my grief long enough to make cookies or buy a present or write a holiday card? Yet, I have found myself finding solace in this time spent with family, the distraction of celebration. I have also discovered reserves of strength within myself I didn't know existed. "A day at a time" has become my mantra. And I find myself feeling thankful in spite of it all. I am thankful that this diagnosis has struck in the year 2013, with exon skipping and utrophin up regulators within a hair's breadth of our reach. One of his doctors said "we are truly within the genetic age." We have the ability to not only map genes but to alter them. If a cure for MD was ever a possibility, it is now. We have the luxury of hope, which has not been the case for families in previous decades. Hope is what gets me out of bed in the morning. Hope is what allows me to take it a day at a time, knowing there are people working on a cure as we speak. I am thankful that both my husband and I have such stable, loving and supportive families. Like all families, we aren't perfect, but I know we are not in this alone and that our families are grieving alongside us, obsessively researching with us, losing sleep with us, hoping for miracles with us, taking time out of their own lives and troubles to lift us up. I am thankful also for good friends, who have continued to call me, text me, or Facebook me to check in and see how I am doing, to let me know they are thinking of us, even when I don't call back, even if I can't call back. I am thankful for my husband, who stands next to me, crumpled inside by his own grief, but still picking me up when I fall down, still helping me find a way out of my own dark desperation and reminding me that the sun still comes up every day. I am thankful in a way I have never been for my sweet boy. I am freed of the burden of feeling exasperated by his four year old boundary testing, by his tantrums and moments of brutality, by his selective hearing and willful disobedience. Nothing he does can make my blood boil anymore. I know I can't be permissive, that he needs boundaries and solid parenting as much as any child, but I no longer feel angry or frustrated by his behavior, at least not the way I did before last month. His unique and special qualities shine like gold now. I treasure everything about him. I wish I were receiving all of these gifts in a less devastating package, but I am thankful for them and grateful for every moment with my son in a way that I never could have known before.
We don't know for certain yet what type of MD he has, we are still waiting on genetic test results, and we don't know what the future holds for us, beyond that it will undoubtedly be difficult and often painful. There is still a lot of adjusting to do, but I know that we will make it somehow, whether we are able to outsmart or sneak around the monster or whether we have to just blast straight through it. Whatever challenges are in store, I know that there will also always be gifts along the way. Even a monster has a few good and unexpected qualities. On that note, below is a holiday greeting from my son, my very own superhero, otherwise known as Sir Spiderbatstorm Prime. May the anti-monster pink wig and red cape be with you.
Parent Project
Muscular Dystrophy Association
