Tag Archives: Parenting

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.

 

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Every son wants from his father to gain a sense of mission in life and receive permission from an elder male to pursue the mission; to feel a strong, loving masculine ground beneath his feet so that he will not, once he’s an adult, have to say to his wife, his children, or to strangers, “I don’t know what a man is, please teach me”; to be challenged toward a vision of faraway stars—impractical dreams and ambitions, that he may make, one day, possible; to learn what part of the sacred circle of human and spiritual life he will be responsible for; and to be mirrored by an intimate elder male and found, in that mirroring, to be a loving, wise, and powerful man. – Michael Gurian, The Wonder of Boys

Watch out (!!) for the father-in-law

For those who haven’t made peace with the inlaws, this is for you.

Family is so tricky… not to mention family of family. I’ve been thinking about this a lot lately and preparing for the arrival of Kat’s father and step-mom. Don’t get me wrong, I am truly excited to have them here and for another opportunity to grow our relationship. There is always that in-law situation though.

I have to chuckle at the stories I hear from other men (or women) who clash with their partner’s parents. Of course, my father in law is just trying to protect his daughter and do his part in making sure she is being taken care of. But I imagine there is a threat that he feels from me. Of course… I would be lying if I didn’t admit my own feelings of being threatened.

My father in law’s voice is in my wife’s mind. Just as my mother’s voice is in my mind. This is why, I imagine, it can get so hairy when they are around. I get to see what has caused my wife to think the way she does, or I get to see certain influences that run so deep they only come out in times of stress, frustration, sadness, or outright anger.

My title, watch out (!!) for the father in law, is said in all seriousness. The first best thing I can do is pay attention. What comes up for me? What comes up in my wife? What comes up in him? The next best thing I can do is to stand strong in my own truth of who I’ve become and to realize that what’s his is his. And the last best thing is to try not to regress, or defend, or fight. Fun times.

I love hearing your stories of family, in-laws, and how you struggle and/or get along with them. Leave me a comment, or check out my page on Spiritual Direction to see how we can dive even deeper into these challenges together!