When I was 16, I watched a documentary called “My Flesh and Blood“, which was about a single woman who had adopted 11 children with various conditions and disabilities. One of the children, a 13 year old with cystic fibrosis, was in the final stage of his disease and didn’t know it until shortly before he died. That’s tragic, no matter which way you look at it, and it shook me. The woman herself was evidently able to accept the losses involved with caring for so many special needs, but I was left very afraid, glad such things were rare and only happened to others. I wanted nothing to do with such brokenness
Fast forward 11 years: I was 27, married with three children, when one of my sons suddenly needed to be hospitalized for acute Immune Thrombocytopenia (ITP). After the initial scare, he was successfully treated. In the follow-up, we were referred to St. Jude Children’s Research Hospital for bloodwork to confirm that it was resolved. In the midst of blood tests, they found something that concerned them: his creatine kinase (CK) levels were significantly elevated. They contacted his pediatrician, who was a member of the same church as us at the time, and she scheduled us an appointment. Several possible causes were mentioned, but I determined not to worry about them until I was told I needed to do so. I was serving at church on Sunday when our world turned upside down.
Our brave and kind pediatrician called us both over so that she could speak with us. She said that she didn’t think there was any reason for us to come to her office the next day: her research told her that we needed to go to the local Muscular Dystrophy Association (MDA) clinic at LeBonheur Children’s Hospital. In her words, “there is a very, very good chance that what [he] has is Duchenne muscular dystrophy“. I looked at my son, sitting there in his stroller, and started to unravel. My eyes filled with tears. Her husband, a real brother in the day of adversity, relieved me of my responsibilities and we stumbled toward our vehicle. We texted some family members to let them know we were coming their way immediately and we set off. We responded in our own ways: my wife, who had worried more over the CK levels, was shocked into numbness for quite some time, whereas I was rocked with waves of emotion, even having to pull over once because I could not drive through the tears and sobs.
We were kindly consoled, but we were wounded. We had our first MDA clinic appointment with both of our boys, since that was recommended, and their blood was drawn for genetic testing. We settled in to wait while our emotions see-sawed between denial and a dawning realization that we weren’t going to make it out unchanged. Things like just seeing the MDA Shamrocks at the checkout at Lowe’s dealt me a hard blow, making me weep. The day came at last when the results were in: both had tested positive for Duchenne.
We took this news quietly — sometimes worrying about something is worse than having it confirmed. Initial acceptance did not mean that we were done grieving. Far from it. Over the next year, we leaned heavily on our family and church, connecting especially with special needs families, realizing that we hadn’t been able to relate fully before. Perhaps we had felt their shock, but not their sense of loss and lasting grief. Now we lost this innocent ignorance.
I found journaling very helpful in this season. In this practice there was both agony and salvation. I wrote out my rawest feelings, things I didn’t even know I felt or thought, and then I would reach out for Scripture. (For those that may not know, in the Christian faith there is a well established path laid out in the Scriptures for how to deal well with suffering and pain.) I shared some of these entries with close friends and pastors and they wept with me. Though our grief was deep, weeping eventually lead to hope.
The whole time I was doing this, certain songs and albums pierced us in new ways. These were the songs of fellow saints and travelers along the highway of suffering. Examples include Ellie Holcomb’s entire “Red Sea Road” album, Audrey Assad’s song, “Even Unto Death”, and the hymn “Lord Jesus, Think on Me”. They seemed to know the feelings that haunted us in the day and piled on us in the night. Beyond mere sympathy, they comforted us. While listening to these modern songs, we were driven into the Psalms in our daily reading. (To anyone unfamiliar with the Christian Psalms, you might be very surprised to learn that they are not just a song book for happy and victorious people, but a collection of songs written for dealing honestly with every kind of emotion, including all of the dark ones we Americans don’t know how to deal with.) I wallowed in every sad section of Scripture I could find, just wishing to know that our pain and sorrow were real and known to God. I came to know I was not alone or a member of the pathetic fringe of humanity: rather, in my sorrow and humiliation, I was keeping company with the very God who himself suffers.
In every pang and wave of tears, I felt my eyes met by the man of sorrows who was also God, Jesus Christ. My problems did not feel bigger than his and that was a comfort. On the other hand, I never felt my troubles belittled, for they were part of the troubles of a groaning world held in an uneasy and unwilling captivity to pain and suffering. There is no sorrow he does not bear with us. In his company, I did not feel hopeless. Though I grieved and hated the brokenness of our world, I learned to long for the future resurrection of the body. The Christian faith teaches that this is the only way “everything sad is going to come untrue”. In this way, the name of Jesus, the lover and savior of the broken, overlooked, and forgotten, became sweet to me, a broken and soon to be forgotten man, father to sons with broken genes.
Hope has given birth to joy in our daily lives in a curious way. In hindsight, we seem to have always lived with an impatience with each day, wishing for greater things. When our comfortable assumptions about the future died (and continue to die), we realized (and continue to realize) that all we have is today. That’s all anyone has, anyway.
Although disillusionment may seem like a loss, it has taught us to be grateful for the small pleasures of each day. This is worth more than you might think: in the end, maybe joy and gratitude for each day are the best things life has to offer.
We have been told that with chronic, progressive conditions like Duchenne, grief is chronic. Each stage of loss brings on its own cycle of denial, anger, bargaining, depression and acceptance. We are only a few cycles in now, we know, but trust that our hope goes all the way down and all the way up and won’t disappoint us. We don’t put our faith in wishful thinking or good feelings, but in what God is doing in Jesus Christ. We believe the resurrection of the body will trump death, even the kind of death that is experienced in stages like Duchenne.
If you are in a similar boat with us, please reach out. Having hope and joy in the shadow of brokenness is a journey filled with departures and course corrections. We need each another. I need reminders as much as anyone. Please reach out. You can leave a comment here, reach out to me on Facebook, or, if you know me in real life, reach out however you wish. I want to hear from you.