Below are excerpts from two notes that I had previously written about my son Jake, who has DMD (Duchenne’s Muscular Dystrophy.) In addition to these two notes, I have added another one that I have just written.
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Death Visits Us, June 2007 – Sometimes Death comes to us without killing the body. It only breaks our hearts. Death did come to our family recently. Nobody died, but Death did come. We learned that Jake, our five-year-old son, has muscular dystrophy, a progressive and irreversible wasting of the muscles.

When we first found out about him, I thought my heart had broke. But I’m beginning to see now that it just broke wide open. I have so much more love to give now. Every day, I try to turn all this pain in my heart into love.

Every day, I try to focus my healing love energy upon Jake – and interestingly enough, I’m finding that it’s getting out to the rest of my family, and beyond too. Every day, my heart opens wider and wider. The other boys, especially Callahan, need all the love they can get now. They know that something is seriously wrong in our family, even if they don’t know what.

I’m seeing that the greatest thing I can do for Jake, that any of us can do for him really, is to be happy with and for him wherever he’s at in his here and now. It’s an incredibly difficult hand that life has dealt him, but I know that, with all our help, he’ll live it beautifully and lovingly. He has so far.
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A Jake Update, June 2008 – A year ago, I told you about my son Jake. At that time he had just been diagnosed with DMD (Duchenne’s Muscular Dystrophy.) DMD is a progressive deterioration of the body’s muscles, including the heart and lungs. It is said to be irreversible.

He is still walking. In fact, since beginning to take steroids (which delay muscle deterioration) he is running all over the place. He has also become very difficult emotionally from the steroids. He is very scared, angry, and frustrated, and he doesn’t even know why he feels this way, let alone how to deal with such feelings. He has nightmares several or more times a week too.

He has enormous strengths, and I believe that, in the long run, he will do well with this life he has been given. Jake is very smart, but his brain doesn’t process right and he knows this. He says he’s stupid, meaning he can’t say what he wants to say.

I took a day off recently and went into the woods alone. I did medicine, and, when I was completely open, about five hours into my journey, I started crying and couldn’t stop. Aspen and I have to always be brave and positive for Jake; but that day, alone in the woods, I felt so sad, and I couldn’t stop crying.

I came away with some wisdom though, when I finally stopped crying. I thought how he and I were going to go out together, me aging into death and him wasting into death. Small comfort, but it is all I had.
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And Now, December 2009 – Several weeks ago, Jake had his semi-annual visit with the doctors at Children’s Hospital. He amazed them. He has improved, rather than gotten worse, in all the physical tests that they administer to him twice a year.

He is the only boy they have ever seen in his age group that can jump up and down. He blew them away by showing them that he can even hop on one leg, either leg – something unheard of in their experience. He can also get off the floor without using the Gowers Maneuver, which is a way of getting up from the floor by using both arms. All DMD boys have to do this by Jake’s age. He doesn’t.

At home he is still running around, jumping and hopping up and down and off the stairs to the floor below. He likes to rock out to music. He’s wild. Outside, he still rides his bike. He still hikes with us. He and I and the other two boys did a two-mile hike the other day. He led the way.

Jake is also the smartest kid in his first-grade class. His teachers are blown out by his abilities. He’s reading and writing beyond his class level. He is really motivated to learn. He has figured out how to use his brain and no longer feels that he is stupid

Jake is the most exuberant person I have ever known. His gestures are exuberant. He laughs loudly. He cries loudly. He yells and screams loudly. He sure doesn’t act as if he has a care in the world, or is fazed by the future that has been presented to him. And if that future does still come, I’m sure that he will meet it with this same exuberance.

I may be in denial. I may be a hope junkie, but I am beginning to believe that my healing energy, along with everyone else’s, is making a difference, Perhaps together we are actually making a difference in Jake’s life, perhaps we are actually healing him.

By Eugene Marks

I’m reading aloud to the boys now. I began reading The Hobbit early last September, soon after we killed the TV. I generally read about 10 to 15 pages a day, although I don’t always read every day. Reading The Hobbit, we followed Bilbo all the way there and back again. We all really enjoyed his adventure.
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I have noticed a big difference between reading aloud and watching a movie. In a movie, the camera describes the scene that surrounds the action and/or the dialogue. The surroundings don’t have to be put into words. We see it all at once. In a book, however, a lot of time has to be spent describing the surroundings, In addition, a book has to describe each and every character in some detail; something we are immediately shown by the camera.

It generally takes me up to a week or so of reading almost every night to cover what the motion picture camera can show in just a few minutes.
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After finishing The Hobbit, I wondered briefly what I would read to the boys next. It soon became obvious – The Lord of the Rings of course. In general, I wanted the boys to learn to use their own imagination to form the images that went along with the words of a story. More importantly, I wanted them to see how ordinary people, like themselves, could rise to a challenge, could persevere throughout the adventure and could even come out of it successfully. Most importantly, with respect to The Lord of the Rings, I wanted them to live through one of the greatest stories ever written.

Right now, reading The Fellowship of the Ring and adventuring along in our imaginations with our Hobbit friends, we have just left the Inn of the Prancing Pony. The black riders have attacked in the night. But thanks to Strider, who appeared just in time to help us, we have survived.

Last night we climbed to the top of Weathertop with them. We saw that Gandalf had been there, just three days before. We also saw, below us on the road, the enemy, five of the black riders. Tonight, we will see what will happen on Weathertop.

I know already of course. I’ve read these books a half dozen times to myself, and three times aloud. I read them aloud to Jonathan, Ariana, and Aspen. I may have to read them again for Zane. At three, almost four years, he enjoys the reading and the energy we all generate, but he probably doesn’t understand all that is going on. Callahan and Jake do though.
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One of the best things that is happening as we follow the Hobbits on their adventure is all the side trips that we take, all the discussions we get into – in the middle of a sentence even. We are constantly going off on very interesting and informative discussions, ranging from why do Elves live so long, almost forever it seems, to who are the rangers and what it must be like to be that close and knowledgeable with the land.

In the book, we are constantly being reminded of the early days of Middle Earth, of all that happened before this story. Maybe we’ll have to read The Silmarillion next. A great deal of the ancient history that is being brought up in the story so far is leading up to the realization that Strider is Aragorn the King.

And of course, there is the perennial question – who is Tom Bombadil? He’s the master and he has his boundaries, but outside of that, who is he? Who is he in the larger story? He doesn’t figure again in either of the other two books of the Lord of the Rings trilogy. I don’t remember reading about him in The Silmarillion either.

Back in early October, our two little boys, Zane and Jake, received their first H1N1 shot. We were told then that, because of their young age, they would need two shots each, the second one to follow the first by four weeks,

What they didn’t tell us was that, after the first shot and until several weeks after their second shot, they were not protected at all, were in fact at greater risk. So, of course, within a few days of getting their shots, both boys became sick with high fevers, with the H1N1 flu itself.

Aspen and I were next, although we’ve been through many flu seasons in our lives and were not at great risk. Our symptoms were less severe, although the stuffy head and the dry cough are still with us now, almost five weeks later,

Then, just as the rest of us were beginning to recover, Callahan came down with a high fever and the rest of the symptoms. His high fever lasted seven days before it broke. We were worried.

Today we are all recovering.
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Then last Tuesday, finally feeling strong enough, I went in for minor surgery, repairing two hernias in my groin. It wasn’t that big a deal, but it has laid me out since. At my age, I have less reserves of energy and my recovery time is slower, especially after having had the flu, even a relatively mild dose of it.
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Last night, talking with Aspen, I realized that my focus this year has been healing body. Last June, I had a tooth pulled that had been a problem for years. With the ensuing dry socket and serious pain lasting for over five weeks, I was barely back on my feet, feeling full of energy again, when fall came around. Callahan and I never even had a chance to hike to Blue Lake or any of the other high mountain lakes.

Last night, still talking with Aspen, I looked ahead and realized that my body is as healthy as I can make it for now. This year, I have taken care of all the unfinished body business that I had been putting off for so long. I’m as healthy as I can be at 76. With all this healing work that I have done this year, I have freed myself for Wanderer’s next adventure, hopefully beginning early next spring.