The first few years were tough. Taking care of Dear Son was challenging because everything we did was so new. At ten weeks old, he made his first trip to Big Academic Medical Center. He would be there for three weeks, while they diagnosed and attempted to get the seizures under some control. While we were there, they started Dear Son on ACTH therapy which required daily injections of the steroid into his thigh. I don’t remember how often we needed to do it, but I did know that I wasn’t the one to give the injections. As you know by now, I have a weak stomach. Dad was there, and his steady hands were the ones to administer the dose. It was a mess too, because the home health company had delivered adult needles and the needles were bigger than Dear Son’s thigh. We were new to all of this and it was different getting supplies delivered to your door with a newborn; this was eighteen years ago so medical care and everything was quite different than it is today. Once that was resolved, Dad would give the doses every day.
As the months and years unfolded, Dear Son’s disabilities became more apparent. While we certainly knew some of the things to expect, one of the biggest challenges was always the physical one. Everything seemed really hard. It was hard to feed him, hard to lift him, hard to get him dressed. On top of that, I couldn’t help but wonder all of the time, why us. We were normal, healthy parents with a love for health and fitness.
Over the years, I began to understand what a blessing that was. Those powerful muscles were no longer just for the gym but to lift and carry Dear Son. I remember when Dear Son hit twenty pounds and wasn’t walking. I thought, “Wow, this is hard.” As other mothers children went from crawling to walking, Dear Son still wasn’t rolling over. I was having to lift him and he was so heavy. It wasn’t just the weight, but it was dead weight since he didn’t have any tone. When he hit forty pounds, I thought, “Wow, this is heavy.” I kept comparing how hard it was to other parents and normal children. They didn’t have to lift their kids. It was hard not to compare everything to other parents but that is all we saw. The neighborhood was full of normal kids and Dear Son was the only disabled one. Through it all though, Dad was there to lift Dear Son.
When Dear Son was ten, I stopped giving Dear Son his baths. By then, Dear Son was growing taller. He was still quite thin and at the 10% percentile for his height. Dad did all of the lifting and by that time, I was growing more thankful for all of those big muscles. He was now in charge of giving the baths and transferring Dear Son to the tub*.
A few years back, when Dear Son hit the 170 pound mark, I was struggling to lift him. I had back surgery to correct some longstanding issues and they also discovered I had three herniated disks from lifting Dear Son. After that, I began using the hoyer lift but I was still unable to get Dear Son in and out of the car.
Soon, Dad began to take over that job too. Now that Dear Son is 185 pounds, he continues to do all of the lifting, where Dear Son is concerned. I know now more than ever that we couldn’t do it without him. Dad goes along on every medical visit and every admission to the hospital. Without a wheelchair van, there really isn’t any other way.
Photo of a father carrying his disabled child out of the pool at Give Kids the World.
I remember too, being on Dear Son’s Make a Wish trip, seeing the value of fathers. As we sat at the pool, I would see the fathers carry their disabled children in and out of the water, due to the lack of water wheelchairs.
I remember thinking how lucky those children were to have such strong fathers and how no one else could fill that need.
Photo of Dear Son
It was also good to see other parents in the same situation as we were. I grew to recognize the tired faces of the parents and to see that we weren’t alone in our struggle to care for these beautiful children.
Photo of Dear Son at home.
Dad’s value certainly goes far beyond the muscles but now I understand. I understand the reason for those muscles. Those muscles are a gift and there is no better way to use a gift than using it on someone you love. That gift, is what allows Dear Son to be well taken care of, to get his baths and to be able to be moved around instead of having to stay in one place. It allows Dear Son to get to a place so he can receive good medical care and it allows Dear Son to have some fun. Dad’s muscles were not given to win contests, but rather to give love to a child that needed it the most. Happy Father's Day, Dad. I am sure if Dear Son could hug you, he would.
*I now have a hyrdrolic bath lift to raise and lower Dear Son into the tub but Dad still needs to transition him into the seat and back out of the tub. Living in an apartment doesn’t allow for me to make alterations to install a track in the ceiling which would make that job easier.
Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.