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