…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.

May we each find some trouble

When in the right trouble we awaken to inner resources and draw upon what is second nature to us. When the common solutions fail to help, we learn that we are carried by patterns beyond our usual awareness, by portions of eternity buried within from the very beginning. Trouble turns our lives upside down, but also inside out; so that the inclinations of the soul can be seen and known.

Michael Meade – the World Behind the World

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

Dying well… one of the most important things you can do

This is a general summary of a talk I did at First Congregational Church in Oshkosh, WI on November 27th, 2016. It is part of a three part series on End of Life, Dying, and living into the seasons of Life.

We are going to be talking about dying and end of life. Please sit with that for a moment. What does it do to you? What feelings rise up in you as you consider the end of your life or the idea and reality of death?

There are a few things I do not know, a few things I do know, and a few things I have seen enough that I am very convinced of. What I do not know is what will happen after I die. I mean, really, how can I know this for certain?!? Yes, I guess there are stories of those who have died and come back. You can believe what you want to about them, but I’m not certain. What I do know is that death happens only once and it is as much a part of life as being born. It is literally woven into the fabric of the Earth. I also know that life itself is dependent on death. The very soil that feeds the plants that feed the animals and so on is made up of dead material. This gives me, as a Nature guy, significant meaning. My body is going to become compost one day and is going to give life to other living beings! This may not work for you. That’s ok. We each have our ways of making meaning of this experience, and that is what we are talking about.

The thing I am thoroughly convinced of is this: Over the course of our lives, we are putting together a story of what it is going to be like when it is our time. Both positive AND negative. Every experience we have affects how we will feel about our own death. So if we have loved ones who have died with pain and suffering or afraid and resentful, this is going into our consideration that this is what death will be like. If we have people we know who have died with grace, peace, and surrounded by those who they love, this will be added to our story. THIS is why how we go about our dying is perhaps THE most important thing in our entire lifespan that we can offer to those who come after us. This affects our community, our family, generations to come. Stories (the stories that future dying ones tell themselves) are told about us!

Stephen Jenkinson says that dying is never an individual event. Every death is a community event and it has ripples that extend farther than we can fathom. For generations to come and, depending on what you believe, from ancestors before. We get one chance to do it right… or I would say, well enough.

If you could put your experience into five words, how would you do that?

You’ll have to bear with me as I try to put these things in linear form. I am used to talking about these things with one person or a family and they come in response to their own story. Each idea comes with 45 minutes of dialog and our time is so limited here. So I am offering a few ideas and hoping some of them are helpful.

It used to be that people would die in the upstairs bedroom with family all around. It was more of a natural thing. But now it happens behind closed doors and the doctor comes out and tells the family that grandma has passed. So a lot of people don’t know what to expect and what might happen. The perspective you’ll get from a chaplain is much different perhaps than one you’d get from a doctor. I think we have to remember, and I tell patients this all the time, doctors are trained to heal. It is their mission to fix. I have seen there really is as much variety of feelings about end of life, and levels of comfortability, in doctors as there are in patients and families. You’d think that if a doctor is around death so often, they’d be more comfortable with it but this is not always true. But dying is not something to be fixed. I hear from medical staff, “So and so is depressed. She wants to die. Call the chaplain and get her some antidepressants.” But so often this is someone who is 95 years old and is all alone! I tell her she has every good reason to want to die. This is ok. Sometimes our spirits and our minds are ready to go but the body is hanging on.

Some people say we should live until we are dead. They don’t want to know about their dying. So they want to go out in their sleep or end their life prematurely. Stephen Jenkinson says it’s not the being dead they are afraid of but the dying. “How connected is someone to their life when they have to be told they are dying,” he says. I have said it before and will say it many times, dying happens to all health, mature, and connected to the Earth beings. It is a physical AND a spiritual experience and the more connected we are to the NATURAL way of things, the more we will be prepared for our own death. But that is the topic for the next talk.

Spiritual Direction and reflections on Life, Trouble, and Heartbreak

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