My Son Dallin #writing101
We at the WordPress writing101 workshop have been assigned today to write about someone we’ve met this past year. The truth, I have to say, is that I haven’t had time to get out and meet people in that much detail lately. Between a new job at work and a turn in Dallin’s health, my life has been full for two or three years now.
Those of you who already know me may have wondered where I’ve been and what I’ve been doing. My son’s care needs have increased to the point that it is difficult to keep up. Also, his health is too unstable for me to make commitments with the level of reliability that I expect of myself. That is why I stopped actively attending Science Fiction conventions in 2014, and won’t likely attend any in 2015 either.
Dallin is 21 years old and has Duchenne’s Muscular Dystrophy. (http://ask.healthline.com/health/duchenne-muscular-dystrophy)
I’ve not talked about him here because this blog’s purpose is to promote my published works, and telling the world that I have a son with special needs is not viewed by me as an appropriate way to sell books. You understand. However, the writing101 prompt wants a character vignette of a person who has had a major influence on my life. I spend much time with Dallin, much more even than I spend with my spouse, so I think he influences my life more than anyone right now. My job is to give him as full and normal a life as possible, while still keeping him alive as long as possible. Right now that means staying out a little late several times a week with him and his peers.
His grandmother first noticed his swollen calf muscles when he was very young and started to add it all up. Muscular Dystrophy runs in my wife’s family and so her mother has had experience with it and knew the signs. My wife noticed that he fell down more than he should as he learned to walk. He doesn’t walk anymore, but he gets around anyway.
But I’ve gotten ahead myself.
Before Dallin started attending Kindergarten my wife commented, “I feel almost selfish, having him all to myself”. Everywhere he goes, he makes friends of every age group. His contagious smile and dry, gently mischievous sense of humor draws people to him in droves. When I’d bring him with me when I went to vote, he’d end up in the middle of a cluster of people I’d never met. He often attended MDA (Muscular Dystrophy Association) summer camp in Salt Lake City as he grew up and my wife was a little bit surprised several years into it to find a mural of Dallin on the wall behind a camp organizer’s desk.
Like a lot of folks, he spends a lot of time in his own thoughts and doesn’t always seem to grasp the power of his magnetism. One day when he was in highschool I saw a young lady from our church congregation, sitting in her father’s pickup truck in the grocery store parking lot, straining her neck to get Dallin to meet eyes with her. I said, “Dallin, will you please wave to that poor girl before she has to go see a chiropractor?” He had honestly not even known that anyone else was around. He doesn’t seek attention, it just arrives and jumps in front of his wheelchair.
In spite of all this he really doesn’t date much. I think it is because of a lack of initiative. This is because his physical needs have required him to be under constant adult supervision his entire life. We’re working on that and I coach and encourage him.
He has always demonstrated much in the way of artistic skills. From tin foil origami to computer art. He has acquired a computer gaming habit along the way, which we have worked with him to correct. Now he spends his days reading, drawing, making things, and playing chess both against the computer and online. Every Thursday he serves as a missionary for the Church of Jesus Christ of Latter-day Saints doing Family History work.
A couple of years ago he started catching pneumonia from time to time.
Each time we’ve agreed to have his physicians add something to his care to cheat the Reaper. Each of these interventions add to his care needs. I and his mother are his primary care providers, but my wife has a bad back, and we have a younger son with Asperger’s Autism that also needs our attention. So we have hired helpers assist us with Dallin, and we have Government assisted funding to pay for them, so we can manage as long as he can. His other caregivers feel the same about him as the rest of us do.
By all rights he should be dead, but medical technology has found ways to extend the lives of people with his condition. It is called a childhood illness because its victims don’t usually get better and don’t live much into adulthood. The type of DMD that Dallin has only gets worse until diminished heart and lung function eventually causes the victim to lose a fight with pneumonia. I’ve always had a good immune system, not so much now that I’m growing older, but Dallin’s ability to heal injury and fight off disease is better than mine ever was. That has helped keep him in our lives I’m sure. We wish we could have him longer than he will be with us. Without the pneumonia and flu vaccinations he gets every year, we might have lost him already. Most recently we’ve started to feed him through a stomach tube so that he can get the nutrition he needs without the risk of aspirating food and drink into his lungs.
He is a joy to have around. When he does finally leave this world he will leave a very large gap in the hearts of all who know him. I know that I will not take it well, so I’ve decided I’ll need to write a book about his life with us to help me cope when the time comes. I guess this blog article is kind of a content study. What kinds of things would you like to know about our lives with Dallin? Leave comments.