Category Archives: family

duchenne, family

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

3 Comments

“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.

IMG_20180522_070904278

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.

 

IMG_20180520_102552621

 

Advertisements
chaplaincy, duchenne, family, grief, spirituality

Light in the Darkness

2 Comments

Sometimes, I am keenly aware that my writing, processing, thinking, and speaking tends towards the dark, the haggard, and the grief-slog of day-in-day-out challenges. Often the things that speak to me the most are those things that put words to the heartbreak. There is purpose in this, a reason that this hopeful onetime-positive Baptist boy from the Midwest now refuses to be pinned down in too much hope and an over-positivity with “what may be.” Western culture is not sane in its stance towards that which is natural and good… terror, trauma, and narcissism has been made into entertainment so that the news becomes Hollywood while adolescence, youth, and denial are celebrated as salvation. Ironically, I was always told we’d get new bodies when we get to heaven, ones that don’t get sick, old, or feel pain. I think if heaven is full of young-bodied youths, I’m not sure I want to be there. Let me enjoy getting old, for God’s sake!

This is why I put words to the trouble, why I try to name the grief in such a way that others feel it in their gut, or their throats close up and they can’t speak. I want to let it hang there for a while and not jump off the hook too early. Someone’s got to do this… and I am so grateful for those who continue to hold us up to the edge of the abyss with a trust that we will not be forsaken, that we may come out the other side. It is also important for me to remember that there are those who have had such bad luck in their lives, who have faced such tragedy that anyone really listening in would wonder if it truly is real. Or else what was in the water they have been drinking?!? Families completely riddled by cancer, trauma, death, tragedy. There are so many in the world feeling worthless and completely cast out of a society glorifying the glitz and glamour of success, money, health, and youthfulness. So many in the world… no, so many in my neighborhood! If I can’t honor the pain they have experienced in their lives and put words to it, how can I possibly get close enough to walk with them in this?

I really am a positive person. I am not lost in depression and unable to see the light. I won’t get pinned down too easily on hope and heaven and miracles… but there is redemption and there is salvation. Watch the birds and the bunnies and know that they are finding food without stockpiles of nuts and grass that are growing compound interest at the best rates. For every winter there is a spring coming, no matter how cold, barren, or buried by snow it has been for the last 3 months… or years. Every time the sun goes down, it comes back up again. Life Force moves through the universe, down into the smallest atom, infusing it all with the buzz of life. Synchronicities and wonders happen to those who pay attention, reminding us that we are not alone and that in some sense, we will be ok. The wild, the world, is not an unfriendly place in its design. As Gerald Manley Hopkins writes, “Christ plays in ten-thousand places, lovely in eyes and in limbs not his.”

There is incredible joy to be found in allowing life to be what it is going to be. This includes death, pain, and grief. This includes praising said life and all that comes our way, praising it all with words and exclamations – sometimes with tears and screams – affirming the life that we see and the life that is given. It is all a gift, after all. We are in debt to life, so let us live like it, speak like it, and love like it.

chaplaincy, duchenne, family

“Coping” as a couple

6 Comments

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, family, Uncategorized

Dad’s Duchenne Top Ten

1 Comment
  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

11 Comments

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.