Tag Archives: duchenne

duchenne, family

“I wish I didn’t have special muscles…”

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“I wish I didn’t have special muscles,” Brendan said to me as I struggled to pull both him and his younger brother through the Farmers Market, with those damn wheels that don’t turn. “I can’t run like Owen can. I can’t jump off things or climb things either. I wish I didn’t have special muscles, Dad.” Maybe he has been putting things together for some time now and after seeing Owen for a few weeks at gymnastics club, all the people walking past him while he was in the wagon finally drove it home. He also had the C.A.R.E. Day event last week for kids with special abilities. Whatever the factors, this was the first time he ever said this and it has been with me for days.

IMG_20180519_094428819 Buddy, I wish you didn’t have special muscles, either. I wish this wasn’t the hand you were dealt. You didn’t ask for this and neither did we. I know I said right away that it’s true, you can’t do all those things… but there is so much you can do. Reading, playing board games, your art, your singing. We can do these things together, and it’s true, you are so good at these things… but truthfully, I haven’t figured out how to give you what you need and give Owen what he needs at the same time. I’m trying to figure this all out, too. How can I be the Dad you need?

I think I might have said to you that sometimes we have things that make life more difficult and we just have to work with what we’ve got. Sometimes, we are given really really shitty luck. This won’t be the only difficult thing you have to deal with. I wish I could see it all as a gift. I say I see everything as a gift, but some gifts I want to give back, that’s for sure… and your DMD is definitely one I would return if I could.

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I don’t know what goes on in your little (or big…) mind. Your brother, either. This has to be so hard for you guys to navigate and some days, when I have enough compassion, I can recognize your tantrums, screaming, breaking things, and aggression as a cry for help. You don’t have the years of getting through tough stuff to know that there is more to life than this. This IS your life. It’s your whole life, and I’m sure there are many times you just don’t know what to do with it. Well, I’m lucky I get to go through it with you. I’m lucky I get to be the one to hold your hand when you cross the street so you don’t trip and fall in front of traffic. I’m lucky to be able to help you get your pants on or to lift you into and out of the car every time. I am lucky to pull you to school in your wagon, to play board games with you, and to take you fishing even though you get tired after holding the pole for five minutes. Our futures are tied together for the time being and I’m glad for that. God goes with us, the land will hold us up, and whatever life we have and receive together can be full and abundant with joy and love.

Yesterday, when we were late for school, I told you that we were not likely going to beat your buddy, Oscar, to the classroom. “It’s okay, Dad,” you said. “We don’t have to beat Oscar every day. Sometimes it’s okay to go slow.” Wow… I don’t know that you knew all you were saying in that, but it’s true, buddy. You can go slow, and often you will see more when you do. And I’ll be there to go slow with you.

 

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duchenne, spirituality

Quite literally, Ups and Downs

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I entitled this piece for a reason. I’ve been thinking a lot about tempering lately. I think there used to be a time when I felt it was of value to maintain a Zen-like middle path where I didn’t want to get too excited and I didn’t want to get to upset. Thrills and depressed… that’s what Anthony de Mello used to say. But, I don’t want that any more. I am fully convinced that this is not the way to learn love, it is not the way to learn how to grieve. It is not the way to grow in our connection to Life and all of life. We have ups and we have downs and neither is better or worse that the other. Perhaps, I can explain.

I did a talk on Sunday about generosity and and brought the full Orphan Wisdom Forensic Audit Method to the teaching. I studied the etymology, I brought in a poet, and I kinda of winged it. Not saying I wasn’t prepared and not saying it didn’t land. But I experienced the full effect of being on the “receiving end.” Here is the down and up of generosity. It comes from the root “gene” which essentially means “stock, kin, and to have been beget.” When they used to say you were generous, they meant your “line” was good. Well, now, few of us know where we really come from and we live in a time of individualism and to a certain degree, miserliness. This is the opposite of generosity, which is to act in such a way as to take into account what “begot” you or what “made” you. Your land, your food, your ancestors, your people… the thing is to let this affect us. This ain’t no “middle path.” This is the down and dirty, learning to “inhabit vulnerability as generous citizens of loss, robustly and fully” (as David Whyte writes about), letting ourselves feel down into that and rise up out of it. “Everything comes from somewhere,” I have been teaching the boys.

Since getting back from Canada and Orphan Wisdom School, I have had a number of firsts, each an up and down of a certain kind. Part of my work in the world, beyond the spiritual director/chaplain/community builder, is to help create and do ritual at transition times. I did my first baby baptism, outdoors by the lake on a Sunday morning. The geese, paddling on the water at the edge of our steamy-breath hazed sight, took flight as the ceremony was complete. The most ideal and wonderful witnesses, reminders of the wild goose that won’t be caged. I blessed baby Sawyer, as one connected to the trees, with elements of earth, fire, wind and water… a calling her down into the land even as we lifted her up and honored her place in the family of things.

Not even a few days later, I was asked to do a funeral for a young mother, who had two young children, six and two. This would be the first funeral I had ever done, but it was one of those “can’t go on, must go on” kind of events. Difficult and heartbreaking, devastating even… but necessary and something that I knew I could do in honor to her. This was very much a down even, going down into the sorrow, but yet, as I offered to the community gathered there:

I first met Jana and Kevin, the day they got their biopsy results back… all the way back in March. I was also there, when they heard that nothing else could be done. These could very well have been among the very worst days. Yes, there were tears. Yes, there was shock. But these things do not equal a hard heart. A hard heart is when we stop paying attention. When we shut down. I never saw that in Jana. When I asked her three weeks ago if there is anything she was unresolved with, any questions that were left unanswered, her response was, “Why? Why me?” This is the question that keeps a heart from growing hard, at least if we can somehow consider that there is no good answer, no answer sufficient enough to take the pain away. When we jump too swiftly to fairness and unfairness, deserving or not deserving, even what God has to do with it… I think this stops our open heart. An open heart is a broken heart…

An open heart is a broken heart. Or perhaps a broken heart is an open heart. However you want to say it, the truth of it remains. We must let ourselves be affected. Don’t shut it out. If you want to live as a receiver and as a giver, you must draw down and be affected.

One final up and down, and this is my life now, as a dad of a boy with Duchenne. Brendan fell last week. In his room. Just toppled. This something that happens with weak muscles and not good balance, nothing new. But he also doesn’t have much in his upper body to cushion his fall so when he hit his bed frame he broke his arm. I got the call and rushed to emergent care where we had x-rays and he got a sling. He was quite silent throughout the whole visit, no doubt taking in our repeated reminders to the doctor and nurses that he has Muscular distrophy and falls a lot. But when he got that sling, he smiled and did a little dance for the doctor… who proceed to say he had never seen anything like this and told all the nurses. Down and right back up again. Light in the midst of our darkness. I am schooled by a six year old.

I had to pick him up and carry him to school a few days later because he can’t walk that whole way. Plus we were late and his wagon had been left at school. A fifty pound boy with one arm and another that is not strong enough to hold on gets heavy quickly so I pushed it as far as I could, telling him that when we get closer he would have to walk. “But I’ll get too tired,” he said. How do I know when he can do or when he can’t do it? Is he playing me or telling me the truth? Well, he walked because otherwise I would be the one down. We went slowly and I watched at how his left foot hit the pavement at an odd angle. Tight calves, I thought. He isn’t planting his heel first. Another problem with DMD. I felt, too, the slowness of his gait as he lagged behind and I tried to hold his hand. It’s ok to slow down. I don’t need to pull him. Innocent parents unknowingly share that we might not get in the back door, but I know we have a special pass and help him get his coat off and carry his notebook for him. It aches to see the signs, to watch the slow progression and to still find these moments of joy, as in the conversation about the frost on the grass. He reminds me… don’t miss this, Dad. I’m going down, I need you to hold me up. Or Dad, I see you are going down. Let me hold you up.

And this comes to my memory just now as I write… just today, a patient with sepsis, confused and difficult to understand, after ten minutes of indiscernible conversation, says with eyes half closed, “Hold me up… I’m going down.” I can’t make this stuff up. I am receiving it all. It’s my kin and it begets me. Be generous to me, Life, and may I respond generously.

chaplaincy, duchenne, family

“Coping” as a couple

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I like this photo, because it was taken in a good moment. I can’t even say, a good day, because our ebbing and flowing these days does not even happen on a daily basis. I am constantly reminded that the photos we take and the posts we make are often made when we are at least good enough to reach out to the outside world. They are only part of the picture though, for me, for Kat, and I would assume for any of us. I can demonstrate some strength, Kat can offer some wisdom and insight… but that’s on the good days… I mean, in the good moments.

On the bad days In the bad moments, it is a nightmare for us. Kat’s need for emotional expression and care clashing with my need to have space, to do, and to NOT talk. There is a chasm there, enough for either of us to wonder (Kat out loud and me inside), is our marriage going to make it?!? More of this later… and note that I wouldn’t go as far as to really believe that there is good/bad in the difficulty of “coping” as a couple, but the shoe fits. What I can say is, it is agonizingly hard. I never thought I would say, “Fuck you!” to anyone, let alone my own wife. And I never imagined that word would be used so often in my marriage relationship. Well, the woman that Life sent my way to love (and to duke it out with) for all my days, or hers, was a glorious surprise and yes, we swear… these days, often. Life did not see fit to give either of us a life of daffodils and moonbeams, and this is our lot. But damn,  we love us some good flowers and a good full moon. We know, though, that we only love the flowers so much because we know that one day, they will not be. And we only love that moon so much because we know that it will wane and grow dark.

41s6e7oy8yl-_sx331_bo1204203200_“Coping” is used so much in the hospital, in therapy, in chaplaincy-talk and I don’t like it. It smacks of “getting by” or something passive that happens as a result of stress that we may or may not be able to make a conscious choice about. I like the term “adaptive strategies” rather than coping skills, as adapting and strategizing are active and intentional. I steal the term from Kenneth Doka and Terry Martin from a book that they wrote entitled Grieving Beyond Gender: Understanding the Ways Men and Women Mourn. I use this resource extensively and it has been so very helpful in my work with grief groups and supporting those in the hospital and in my spiritual direction sessions. Doka and Martin’s way of framing grief styles has given me the awareness that Kat and I, in all of our shitty annoying processes, are not better or worse in how we grieve, we are just different.

Without divulging their entire theory and getting into too many spoilers, Doka and Martin assert that grievers exist on a spectrum between intuitive and instrumental grief. Intuitive grievers are affective in their grief, feeling strong and powerful feelings, and needing to vocalize their grief process. Instrumental grievers are doers, needing time and space to process, think, and make meaning of their grief. They have emotions, but they are much less dynamic and vibrant than those of the intuitive. Men and women fall somewhere on this spectrum, tending more towards some blend of the two poles. It is far from gender-prescriptive, but men tend to fall more on the instrumental and women more towards intuitive.

The very distinct benefit of seeing grievers on a continuum is that there is affirmation for a less emotional style of grieving. For years, therapists, chaplains, and grief “specialists” have said that the only way to process grief is to feel all the feelings. Even in chaplaincy residency, I was expected to verbalize feelings, verbalize feelings, verbalize feelings… maybe much more than is within my capacity. There was benefit to it, but I am a chaplain, not Joe Smith who works his blue collar job and fishes and hunts in his free time. Many people, men AND women, are active and cognitive with their grief, even when they are unconscious that it is their grief that they are working through.

Just last night, to give a perfect example, I got home from my final grief group session in this series and said to Kat, “I can’t talk much right now. I need to sit with this last session and decompress from it.” She said a few minutes later, “You can’t really support me in the way I need to be supported, can you?”… because she wanted to vent and feel. My response was, “Well, I support you in many ways, don’t I? Can I be the support for all your feelings? Probably not. No more than you can get up and go to work for me, when I don’t even want to get out of bed. But I have to do that. I have to get my ass going and do it anyway.” So this morning, as I walked out the door at 6:15, I said to my sleeping wife, “Can you go to work for me today?”

“Sure,” she said as she rolled over and went back to sleep.

And this is how we do. It sucks to not get all your needs met from your spouse. But how many people when I ask how they are handling things as a couple (insert “coping”) say, “Not good. Really not good…” They don’t know why, though, that’s the thing. I just want to say, come to my grief group. It will help. Kat and I, as much as it pains us, know that this is just going to hurt. It sucks. It really fucking sucks. But we do the best we can. In our worst moments, we can’t even talk to each other. In our best moments, we hold each other. And most days somewhere in between, we ask all the unanswerable questions, swear cry and talk, and at least sit next to each other on the couch while we are on our smart phones.

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.

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.