Category Archives: duchenne

duchenne, elders

“Let other people say the hopeful stuff”

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“Stuff” wasn’t really the word he used. “Let other people say the hopeful shit” was what he said. “You can leave that to them, and then sometimes you’ll probably want to shoot them between the eyes. Your task now is to feel what this feels like, to be troubled by it, and to get yourself into the meaning-making business. See, everyone wishes they didn’t have to go through something like this, they ask why did it have to happen to you. Well, it didn’t happen to you. You are standing upright and healthy. You didn’t get this. You’re son did, and he didn’t ask for it. This is his life now and you have to walk it alongside him and help him make meaning of it.”

Not even three weeks after learning of Brendan’s diagnosis of Duchenne Muscular Dystrophy, I traveled to Ontario, Canada to attend the first session of the Orphan Wisdom School 2017. I didn’t go to get more information. I’m up to my eyeballs in information and I have more than enough to live out my days well-enough informed and able to talk like I know something about something. What I did go there for was to learn, and especially to learn from Stephen Jenkinson, an elder in the truest sense of the word. I have been lucky enough (or perhaps foolish enough) to have a keen nose for elders and to know one when I see one. I think it has something to do with the lines in their faces that come from something, or somewhere, more than age. There are those who carry enough intention, clarity, and wisdom that being in their presence is enough for me. Stephen is one of these such elders.

Stephen told us we were there to learn, which he defined as the unbidden and unsought encounter with unwelcome things… things we already know. This learning, he said, is expensive because it is incredibly costly. We were told that we were under no obligation to know anything. We don’t have to know anything in particular to learn. But there was an expectation that we would learn… though tracking with his stories and his roundabout way of getting to the point was an exercise in and of itself. Stephen said he doesn’t care about our inability to feel able. He cares about us, not our disability. The feeling of not being able is an assurance that nothing happens. 

So when I approached Stephen to talk to him about the trouble that I carry with me and the burden on my heart, I offered that it may not be a good time as he had just talked for three hours. But he paused with me and opened the door. I wept (it was the second time that day already). On my better days, or perhaps my worse days, I try to be a hopeful person. I tried to rally my emotions and said, “I know. We have a lot of life left to live. I will still teach him what it means to be a man, will still make many memories, will still introduce him to a village and to elders he can learn from. It’s not over yet.”

And I’m sure, knowing what he was seeing me do, he essentially told me to cut that shit out.

The lesson is that I don’t have to be hopeful. Hope takes me away from the present. It is not real. What is real is what is happening now and the only way to speak of trouble, to make it real and tangible and to allow it to form me, is to let it shake me to my bones. Sometimes our blood needs to run cold just to feel what it feels like and so we can know what it feels like to get warm again.

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duchenne, family, Uncategorized

Dad’s Duchenne Top Ten

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  1. Duchenne (pronounced due – SHEN) muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness.DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys (roughly 1 in 3500). (From MDA)
  2. Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk. The calves often are enlarged. By the early teens, the heart and respiratory muscles also are affected. (From MDA)
  3. With recent advancements, what my son (who is six) will experience in his teens or 20s is very different than what I see on the internet… but that doesn’t really make it easier.
  4. My son does not build muscle. In fact, many of the things that would increase strength in normal boys, cause more rapid muscle degeneration (stairs, climbing, pulling, pushing, getting up and down from the floor, etc). At six, he doesn’t have as much awareness, so needs constant awareness from parents to not overdo it. Multiply whatever walking or stairs climbing he does by 60 and you’ll have a sense of what it’s like for him.
  5. Watching him try and climb the stairs or fall so often or have trouble getting off the floor is torture. We have to carry him up and down the stairs most of the time, especially at the end of the day.
  6. Because of the stairs, we had to get a new house that’s all one level and would accomadate a wheel chair which could be in by his early teens.
  7. Not looking forward to medical bills and cost of medications for the rest of his life.
  8. Talking to my son about this is gut-wrenching… not to mention knowing how and when to tell others about what’s going on. As we often remind ourselves, “He knows.” At least he knows something isn’t the same with him as with other kids. I have told him that he has “special muscles” that get more tired that other kids so he has to ask for help. He also knows that there are things that can “hurt his muscles.”
  9. Chronic Grief. It’s legit and it applies to us as parents 100%.  And how we process this is SO different and SO challenging. What this does to a marriage is exhausting and discouraging in and of itself.
  10. As it currently stands, there is no cure. This means that DMD is ultimately fatal and that my son has a much shorter life expectancy. I may be there when he dies. If this is the case, my fantasy about what the future was going to be like has, in many many ways, dissipated. I have no clue anymore.

 

duchenne, family

…And then we discovered our son has a fatal genetic disease

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Duchenne. The first time I ever heard the word was when Kat, sitting next to me on the couch, covered her mouth and gasped. “Oh no,” I thought. “It’s Friday night and I just want to watch this movie and relax,” but I sensed a storm coming. In my customarily end-of-the-day compassionate manner, I didn’t respond. She will likely say something before too long…

She didn’t, so I said, “What’s wrong?”

“What if Brendan has Muscular Dystrophy? He has all the signs for Duchenne.” There was horror in her voice.

I had never heard of this, and frankly, it’s one of those things that perhaps the mind is shielded from as long as possible. Why would I go out of my way to research a life-changing fatal disease, anyway? I had already arranged to meet with B’s physical therapist to talk over some exercises we could do at home as we were not satisfied with his progress with his gross motor skill development. I had to wait till Monday, so I figured I’d put off the worry until I had more information. A useful adaptive strategy at the time. Especially, as Kat had to leave for a weekend yoga retreat. I remember Saturday evening, when it was just me, phoning my dad after a bit of research, and saying that if he really did have this, it would feel like a death sentence. I don’t know what I would do… I wept then. He too considered it wise to wait and see what the professionals say.

Monday came around and Kat had already emailed her concerns to the physical therapist. As she and I talked, she noted that there were a number of red flags pointing to this and recommended we meet with the pediatrician soon. I scheduled a meeting on Friday. Again, postpone panic until I have more information.

When we met with the pediatrician, especially after letting him know of our concern about Duchenne (DMD), there was urgency in his voice. “I’m going to do a blood test tonight for you guys. We should do this right away.” So we did the blood draw and the did a CK (creatine kinase) test. The doctor told me he would call me tonight to let me know what the results were. The next few hours were agonizing. Of course, I did a quick google search to find out what a normal level was. 22 to 198 U/L (units per liter). When there is muscle damage, CK enzymes get into the blood stream, so with a disease like DMD there can be 10 to 20 times this amount. At about 5:00, the doctor called and said that they are having to dilute the sample and he will call me soon. At about 7:00 or so, he called and said that Brendan’s CK level was 26,000. The only word I had was, “WHAT?!?” “Yah… it looks like he has this,” the doctor said. “I’m so sorry. I will be on the phone with Children’s first thing Monday and see what the next steps will be.” Thankfully, the boys were in bed already, because I really couldn’t breathe. I immediately called my parents who were en route to the airport and not home. I asked them to call us when they got home.

Those two hours were torture. My life as I anticipated it was collapsing before me. All I could think of was that I would see my son die, that all that things I wanted to do together we were not going to be able to do, that our life was forever changed. And indeed it was. I kept saying to Kat, “I just wish my parents would get home. This is too much. What are we going to do?” When they did, we said, “Are you sitting down?” I wept, I couldn’t speak. “The results were not good,” I said finally. “He has it.” They said, “We’ll come first thing in the morning.” This was the first week.