My Superhero

I often allude to the tight-rope rare disease patients must walk, trying to maintain a perfect balance of being able to keep our symptoms under some control to be able to function among the living.  Being both a rare disease patient and the mother of a child with multiple rare diseases I feel like every day I walk two tight ropes - working endlessly to keep us both afloat.

On the easy weeks it means lots of calls to pharmacies, insurance companies, remembering to give our daily medication regime, ordering our safe foods and cooking them, and working with schools and doctors to ensure normalcy while keeping things safe. On the harder weeks it leads to many calls with many specialists trying to coordinate them all, never knowing what particular issue is at play. And every day it means being in tune with my child, knowing when something is wrong, when he is slipping even just a small bit and then doing everything I can to ensure I can catch him.

I pride myself on being intuitive about when he may be teetering but it took more weeks then I would like to admit for me to realize something was recently amiss. Of course immediately, I began hours of phone calls with every member of his amazing care team to piece the puzzle together. His pediatrician plays quarterback with me and makes sure we don’t forget the easier "normal” kid stuff, before we blame his rare diseases.  His specialists each weigh in as it relates to their world and I am left to share each of their opinions with another until some sort of game plan emerges which I am then left to execute.

The execution also has its challenges - whatever it may be- tolerating medicine - successfully infusing - but it doesn’t matter how hard it is- we have to do it. Amazingly at such a young age my child also understands this and in fact rises to the occasion. Perhaps it is because he has never known any other way of living or that he finally understands that when we do something it makes him feel better.  Thankfully, this week his initial action plan was easy and while not fully resolved I am hopeful we are finally moving in the right direction. 

I am still trying to get over my own feelings of guilt for not having realized the issue sooner but his resiliency grounds me. Even on his hard days he finds ways to delight in play and fun.  We have worked hard to ensure his rare diseases never define him but I see how they have shaped him. His strength and bravery are what superhero’s are made of.

But sometimes like tonight, I am equal parts in awe of my child and heartbroken that he too must live his version of a rare disease life. I know that he can and I know he will thrive in spite of these diseases, in truth he already has, but some days it is hard not to wish he didn’t have to.

So when I feel helpless and distraught that I can’t take these diseases away from him - no matter how many doctors we see and plans we make-I remind myself that what matters most is that he feels my immense love and unwavering support because I know for sure this is what gives him- my superhero- the strength to keep flying and the resiliency to on even his hardest days still find laughter and joy.