Summer is in full swing. Although delayed with surgery recovery, appointments, and recent illness it’s now here. Summer for us means long family bike rides, pool time, picnics, outdoor movies/music, golf, baseball games, farmers markets, and festivals. This summer has brought changes for us. Juliet wanting to do it all, take it in and Jack not interested in doing the once enjoyed activities. Some of it is due to his lack of energy and some due to the progression of disease. MPS doesn’t get the summer memo to leave you alone. Although we are nearing the end of a long battle with antibodies it hasn’t changed the battle against the progression of disease. It’s such a difficult and emotional topic it’s hard to muster up the words to describe something so deeply personal that is experienced. Watching your child regress is unimaginable. I try to speak candidly, I speak raw. I speak about my fear, hurt, heartache, funny moments and opinions. But as I reflect on my own sharing I realize I don’t talk a lot about those devastating moments of watching, over a short period of time, your child inch away. Small little things poof gone, I miss so many things already. Mostly certain words and favorite activities.
Sure I may mention the day Jack lost a lot of his language skills or when his milestones were delayed or when playing with complex toys were replaced with toddler toys. But I recognize that not only do I struggle with sharing this, you don’t read articles, posts, blogs or emails about parents watching your child struggle to say something that came out of their mouth easily the day before, or calling you something other then your name, or the moment your child grasps onto you wanting to be carried instead of walking, or the moment toilet training becomes an unobtainable dream. And recently dropping him off at a life skills class instead of a mainstream school program.
Those barbaric moments are rough. Beyond explainable and give me unmeasurable amounts of pain.
Friends and family reach out at diagnosis, support in times of crisis, grieve with your sadness, but solitude engulfs me as I watched my son slip away.
I sit each day tackling these moments by letting God guide me. I’m grateful for the Genistein that is slowing down the inevitable. I’m an thankful for all the names of people Jack remembers and uses on a daily basis. I am thankful he can still go places.
Update: Jacks recent antibody testing has us seeing a pirate party in the near future. We pray that this weeks labs will or should be “normal”. Once his antibodies titers normalize we will then watch his GAG levels go down and watch our boy gain some much needed energy and hopefully see his belly shrink down from his enlarged spleen and liver. And then we check off antibody challenges and move on to saving his brain! More to come on how you can help…