One of the worst days as a parent to a son with Duchenne looms over us as it is just a few short weeks away. You see, we have two boys Jonah, 16 and Emory, 13 both with Duchenne muscular dystrophy.
They both lost the ability to walk at age 8. We have had to endure watching as their bodies deteriorate in front of our eyes due to the natural progression of Duchenne. We’ve watched them go from playing with their friends and doing all the stuff boys normally do to gait changes, to falling, to losing their mobility. The next step was transitioning to motorized wheelchairs for both boys, which was a difficult step but enjoyed the freedom it gave them to continue to explore the world around them. I never thought I’d think a wheelchair as a blessing-but it has brought the boys so much independence.
Now we are facing both boys having severe scoliosis, with our youngest, Emory age 13, who is undergoing this surgery first as he is at 80 degrees and in a lot of pain. Jonah is not far behind , but Jonah is at 60 degrees however with not a lot of pain. This surgery for Emory, will consist of having two steel rods placed in his body, from his neck to his hips. This surgery itself has many risks but the healing process does as well, with Emory’s pulmonary function being our main concern. We have spent far too many days in emergency rooms and our family has already been through several surgeries with the boys due to falls. The worst being when Jonah, had an accident in his wheelchair breaking both femurs, both shoulders and both knees leading to having plates and screws in both his femurs.
As I sit here and write this, I am thinking so many things.
Will he encounter complications during the surgery? How much pain will he have in the days after surgery? How do we take care of him without aggravating the incision site?
Too much to ponder but it all must be pondered…
At the same time as I sit here pondering all of this, I try to push away the woe is me attitude. I try to reposition my mind into the matter of fact mode; it has to be done. And in the grand scheme of things, we are lucky. That we are armed with the best information and the best medical team available to us and we just must have faith; faith in each other and faith that it will be enough. That I need to remember our family motto:
“Live for today without the worry of tomorrow”
