Every kid dreams of growing up to be a superhero. I can remember running through the house pretending to be everyone from the Incredible Hulk to Superman, and who didn’t dream of shooting webs like Spiderman? Well, fast-forward a good number of years and unfortunately, I am still not a superhero. I don’t think any child ever has a single moment in which they realize that they probably won’t grow up to be a superhero, rather it is a slow transition from what could be to what really is. Right now, you are probably hoping that I have some kind of point I am trying to make with all of this, and I promise I do, just bear with me.
So, just as most kids gradually move from a life of fantasy to a life of reality without any clear defining “AH-HA” moment, so too did I move from the life of an everyday parent to the life of a special needs dad. Please don’t get me wrong, I am glad it was gradual as I would have probably lost my mind on day one if I was just tossed into this life, but given this, it was a process of changes and realization and the move was pretty easy. Now, what does this have to do with superheroes? Well, I just realized today that my lot in life is that of Alfred rather than Batman, and I couldn’t be happier about it! If you don’t know who Alfred is, I would suggest catching up on some Batman or Googling it, but the short answer is that he is Batman’s butler/number one assistant. Alfred’s job is to see what Batman needs before he needs it so that crimefighting doesn’t have to wait for the bat suit to finish drying. Furthermore, Alfred is always there to give Batman some sage advice or even a bit of a scolding when things get a little sideways. I love the idea of being Alfred to my boys. I feel like every dad strives to lift their children up and step back as they move forward, but with boys who have exceptional needs, this comparison takes on an even deeper meaning. Alfred doesn’t make the newspapers or grab the headlines. He isn’t flashy and doesn’t even get many good one-liners, but what he does get is satisfaction. Every crime that Batman thwarts is a win for Alfred just as every smile from one of my boys is a win for me. Now my boys probably won’t strap on a pair of tights and a utility belt anytime soon, but they can still change the world.
First, they teach others more about Creatine Transport Deficiency (CTD) through studies, trials, visits, and observations. While they “work” on the front lines of research, we “Alfreds” prepare. We drive, fill out forms, sign statements, book meetings, and visit hospitals. We wake up at three AM and get to bed around midnight on study days. We fight through tears as we bubble in countless “no’s” in response to “does your child?” and hold panicked arms as they flail against the needle of a blood draw. We do this because we know that they have the strength to accomplish super-human feats, they just need a little extra help with the details.
Next, they participate in the community to increase both awareness and acceptance. Again, this task isn’t without risk for the “superheroes,” but for us, it requires us to take on a whole new role. First, we have to make sure that we have everything set up to help them be their best so that they can really shine as they show off their great abilities. Next, in true superhero fashion, we step in front of the slings and arrows that seem to fly, often from well-intentioned onlookers. We do this in the background because the last thing we want is to let anything dim the light that the boys provide. We also take on the sometimes-difficult task of just putting the boys out there so that they can do their thing and show others their amazing abilities. This final task may be the hardest of all as we know that it means that the boys will occasionally get emotionally scuffed up by those around them, which is why we also help dust them off when they fall and point them back towards their quest.
Finally, they inspire us to be better than who we are, and this is perhaps the most rewarding part of the life of an Alfred. Simply by telling others, communicating and listening, we help the boys reach their full inspirational potential. Alfred will be the first to deflect praise for a lifetime of their own success in order to highlight a single moment of victory for one of the boys.
I provide my take on “life as Alfred” not to detract from the fact that our boys are superheroes. They are the ones who get up each day and take on the task of battling the monsters that only they can fight. As much as I wish reality was different, they have struggles that do not belong to me. What is mine is the unbelievably humbling role of Alfred, a position that allows me to be in the presence of superheroes every single day. Perhaps it is this honor that kept Alfred going strong for so long? Either way, I must go and help prepare our superheroes for another day of amazing accomplishments and unexpected battles!