Tag Archives: family

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

“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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“Coping” as a couple

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.

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

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.

Son, you are small but you contain worlds

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You are small, but you contain worlds.

You are helpless, yet you shine with the power of life itself. You cannot contain your own power.

When we are together, there is nothing else. You are present, rooted.

You remind me of the miracle of being here.

You reach out. You are testing, exploring, carrying out brilliant experiments. You play in a world of desire and thwarted desire, pleasure and pain, sleep and wakefulness. You find your place in between. You take everything in.

You will know sorrow soon enough, perhaps even despair. Great suffering may befall you, yet also great potential for awakening. You may question everything you once believed to be true. Your path may become unclear. You may stumble in the darkness.

I may not be around to help, or give answers. That’s okay. You will find your own way, learn to trust your own stumbling. Or maybe your questions will fall into silence, and you will remember the wonder of these days, the ones we spent together before time mattered at all.

You are the illumination, little one, the hope and the possibility. All the darkness in this world seems so insignificant compared to the light and wonder in your big eyes.

I cannot tell if you are old or young. Perhaps the world has it all backwards. Perhaps you have lived a thousand years or more. Perhaps this is your final incarnation. Perhaps you have fathered me, so that I may find myself here, next to you, broken but whole, humbled, brought to my knees in gratitude. I do not know.

It does not matter. I will assume you are ancient, and worthy of the greatest love.

And you will remind me of the days when there was strength in being vulnerable, and joy was always near.

– Jeff Foster

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Why I don’t want to tell you about my intentions

Having moved to Oshkosh now, some six weeks ago, I have set some intentions that I hope will move towards change. I don’t like to tell people of the things that I hope to change ahead of time, because I have, so many times before, passed from one thing to the next before any real habit sinks in. Fads, my friends call them. And yes, there is truth to that. So I keep a lot of these intentions to myself until they are well under way.

Now that I am here, though, in this new community, with a new climate a new schedule new rhythms new house new job and new habitat, some things feel easier. An easier flow. So rather than saying, as I have said so many times before, I want to write more or I think I want to start working out at the gym, I wait until I can say I am a writer (or I really enjoy my regular writing routine) and I work out on a regular basis. These are things that I already do. I set the intention a long time ago, I just didn’t share it with you. Make sense? Maybe? I guess it doesn’t really have to make sense to anyone else as long as I am doing it. I’d rather doing something well and consistently than talk about it. But that’s just me. Unless you are talking a lot about something you have not really committed to doing… then we have something else to talk about.

Maybe I don’t want to talk about my intentions simply because I am afraid of failure. That very well could be true as well. If I tell you and then don’t follow through, it feels like failure, and God knows I really don’t want to fail. I don’t know… it’s all a part of my own process, just like you have your own process, and the person who just got a cancer diagnosis or that conservative pastor or the homeless guy on the street all have their own processes.

So now that I am in this new place, I’m just doing stuff. I don’t want to talk about it too much. I trust my heart and what God has taught me these last many years and I trust the wisdom that I have gleaned from those who have come before. I am going to do it, and I’m going to do it fully. How about you?