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Dad’s Duchenne Top Ten

  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.

 

Son, you are small but you contain worlds

SON

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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Winter – little deaths, seasons, and the end of life

“Transcript” from a talk I did. Another from the series is on Dying well.

What I want to do today is get into winter. Really get into it. Last week we talked about our dying time and how we might see it as one of the most important things in our life we can undertake. I received a question, “How do you help?” Tied with it is another question, “Do we have a choice in how we die?” While I don’t think we have a choice in what we die FROM, I do think many of us, if we are so lucky, will INDEED have a choice as to how we die… or another way I would answer this is that we have a choice in WHO WE ARE WHEN WE DIE. Does that make sense?

So who we ARE, at our own dying time and who we ARE when we are with others at their dying time really is how we help. This is how we HEAL and how we help others HEAL… and actually how we help the community and the EARTH heal, too. See it’s bigger than just us and our little lives! We help and are helped by getting into the NATURAL way of things. I said last week that dying happens to all healthy, mature, and connected to the Earth beings.

This is why I think reflecting on WINTER can be so helpful. Winter happens, well at least around here (not so much in California), every year, and it has happened for thousands and thousands of years. It is a necessary part of the cycle of life. The plants, the animals, the land, the water… they all depend on winter. Dormancy, hibernation, cold, death… these are part of the circle. And just as it happens to the Earth, so it happens to us. And our life cycle as well… birth/the new growth and becoming of spring, early adolescence/the fire, consumption, and excitement of summer, late adolescence and early adulthood/the shadows and mystery and preparation of fall… and adulthood to elderhood/the maturity, work, embracing, and then winding down of winter.

“December finds himself again a child
Even as he undergoes his age.
Cold and early darkness now descends,
Embracing sanctuaries of delight.
More and more he stares into the night,
Becoming less and less concerned with ends,
Emblem of the innocent as sage
Restored to wonder by what he must yield.”

~ Nicholas Gordon 

But what does our modern world tell us is good? If you were to consider a season that gets highlighted more than any others, what would it be? Summer. Movies, music, adolescent culture. And is it reasonable to think that this then affects how we view the later part of life… or how we idealize certain aspects of the NATURAL way of things?

So what can we do? How can we live into winter more deeply? I want to take some time to talk about this as a group. But first a reflection or a letter to the garden in December.

“It is December in the garden,
an early winter here, with snow
already hiding my worst offenses —
the places I disturbed your moss
with my heavy boots; the corner
where I planted in too deep a hole
the now stricken hawthorne: crystals
hanging from its icy branches
are the only flowers it will know.

When did solitude become
mere loneliness and the sounds
of birds at the feeder seem
not like a calibrated music
but the discordant dialects
of strangers simply flying through?
I have tried to construct a life
alone here — coffee at dawn; a jog
through the chilling air

counting my heartbeats,
as if the doctor were my only muse;
books and bread and firewood —
those usual stepping-stones from month
to freezing month. but the constricted light,
the year closing down on itself with all
the vacancies of January ahead, leave me
unreconciled even to beauty.
When will you be coming back?”
–  Linda Pastan, The Letter

Group reflection:

What are some of the rituals that you find restorative, or that you might try, to make your way through the “winter?” Literal OR Figurative

 “On the first day of winter,
the earth awakens to the cold touch of itself.
Snow knows no other recourse except
this falling, this sudden letting go
over the small gnomed bushes, all the emptying trees.
Snow puts beauty back into the withered and malnourished,
into the death-wish of nature and the deliberate way
winter insists on nothing less than deference.
waiting all its life, snow says, “Let me cover you.”
–   Laura Lush, The First Day of Winter

To be rooted to the land you walk upon

It means something to be where you are from. And not just your family, not just your culture, or your religion or your country… It means something unequivically significant to be an occupier of the land you live upon. I am quite certain that most do not have this sensibility, at least not consciously but perhaps when really pressed, would affirm how important it is to them.

What I am getting at is an extra level down into a deeper sense of one’s place in this world, one’s sense of self, one’s spiritual life, and one’s connection with all that is.

There is meaning to the old saying, “You are what you eat.” In a quite literal sense, our bodies our composed of the food and water that goes into us. What other way is there? This is why, when we lived in Oregon, we drank our water, straight from the land, straight from the spring. No filter, no chemicals. And food… Where is your body connected to if your food comes from thousands of miles away or is processed to the extent that it can only be called, as Michael Pollen terms it, “edible food-like substances.”

So it means something very literally in regard to our physical make-up. But what does it mean to be from the Fox Valley in WI? To have grown up on a farm and lived there your whole life? As a chaplain, living in one of the most “homegrown” cities in the country, it means something to talk to my patients about where they are from and wehter their parents grew up here too. For a person living in city and never having left, to never found one’s self in green space, with one’s hands in the dirt or toes in the sand… This means something to that person. Maybe an ungroundedness or a sense of nature as “enemy.”

There is a profound teaching in observing the greatest tai chi masters (watch a video of one on YouTube). Where do they draw this life force from that allows them to move people without even touching them or to be unmovable themselves?