I am not a blogger. I have tried on many occasions but in my life, nothing has held my interest in a way where I would like to write about it so frequently that I could create a blog. I love to write, and I have many, many interests. My wife would say I have too many. Coaching, my company, playing guitar, botany, mindfulness, just to give the small list. I am what you might call a buffet intellectual. For those of you who think that is obnoxious, I stole the line from the Simpsons so settle down. While I enjoy and love these activities, the idea of writing about them with regularity is inconceivable to me. That is what makes this blog so ironic. It is a subject I am loathe to write about. It is also the most important thing I will ever do in my life and is worthy of every word that I write forever more. You see my son is sick. Just writing it makes my anxiety peak in a way that I have never felt in my life. He has muscular dystrophy. It is a terrible disease that could rob him of nearly everything including his life. The worst part is that while he had mild symptoms (which we are thankful for) had it not been for a series of strange circumstances, I would have blissfully continued to live my life unaware of the illness that is progressively hurting my son.
Therefore, I write now.
This disease needs to be discussed, understood, and beaten. My journey was nearly six years long and could have been 3 weeks long. As I tell the story of my family and our journey, it is one of amazing people and tragic decisions. Of hopelessness and a belief that we can make a difference.
The story of our son’s muscular dystrophy begins when he was three. There were no signs that anything was wrong. He was developing fine physically and mentally he was clearly ahead of many other children. We were thrilled. The only small thing we saw was he had weirdly learned to walk on his toes instead of flat footed. During one of his regular check-ups, the doctor said we didn’t need to worry about a thing and that with most children the issue resolved itself by no later than age 5.
That was that. He was what they called an idiopathic toe walker and there was nothing more to it. It would resolve itself and we would move on and never think about it again. Spoiler alert- that is not what happened, but in the short run they were right. Jack continued to toe walk, but his life was not impacted, and things continued to be ok. He struggled with running, but we were told that was normal for toe walkers as they had shortened Achilles because of the toe walking and once, he outgrew it he would catch up to the other kids. We accepted that we weren’t raising the next Usain Bolt and life went on.
Then his 5th birthday came and went, and the condition was not improving. In fact, it was getting slightly worse. We went back to the pediatrician and this time they recommended some PT to help Jack learn to walk properly. Again, no cause for concern. We began his physical therapy at John Hopkins and there was a little bit of improvement and life went on.
Then PT began to drag. There was minimal improvement at the beginning. It was short lived, and the results were fleeting. We tried some night splints, but they were uncomfortable and poorly made and did little to help him other than making sleeping hard.
We were beginning to worry, and the little voice parents get in the back of their head was speaking just a little bit louder. None of the things we had been told were coming to fruition and in fact things seemed to be getting worse. He couldn’t get his foot all the way down now and we were seeing his shoes wear out quickly. It was at this point that we moved Jack to a new pediatric rehab facility called New Beginnings.
This is where things would change forever… just not right away.
Ryan Barbera is the co-founder of Strongest Hearts, husband of Tania, father of Sofia and Jack, Feeder of all fish and dogs in the house