Empty-Nest? Not Quite!! Rare Disease Style

I live in a part of the country that was hit with some pretty unusual weather over the last few weeks. We had a couple of weeks where things stopped, similar to early in 2020, but yet, very different. And as I hear people start to get back to their routines again, and so happy to be back to doing their schedule, I can't help but think of those like my son who one day get a name for the way they have felt and are told that this is their new normal - and that the life that had been living and loved will never be that way again. Yes, I am going down that pity road for just a moment. And, yes, even 8 years into this journey it is ok to do that every now and then....

You see, not only did my son have dreams of what his life would be as he grew up, but so did we. And sure lots of little boys grow up hoping to one day be a professional athlete and do not obtain that goal, but for most that goal is not ripped from them in such a horrific and humiliating way at the age of 12. And for most of the parents out there - they knew that dream was not going to come true, but they could cherish the years of their son's role playing and dreaming. For us, though, one fall we learned that he would never play at the level he once had.

Not only that, being on the kind of competitive club that he was on, when I begged for a show of support as he was struggling emotionally with his fall from being a starter on one of their top teams to not getting a whole lot of playing time on their "C" team - I was told they would sign a soccer ball for him. His doctor wrote the necessary paperwork for Make a Wish and he was denied and I was basically told if he got worse to apply again. Here we were sick enough to not be able to live the life he wanted, but not in a way that the world around him would recognize or validate. His disease doesn't have a well-known name, he looks like every other kid that was still out there able to play on that field. To most it probably seemed like we were overreacting, over-protecting. But we knew. We knew that his whole world had changed in those few weeks.

Our life had changed too. We can't just go on the vacations we see other friends our age enjoying as the empty nest comes. Our nest is not empty and to leave for any period of time means a lot of forethought and planning. An evening out may very well end early if needed at home. A family vacation is often a lot more complicated than the pictures I show on my social media feed. Making friends has always been challenging, with a child with complex health issues, because I had so little life that others could relate to and what they were interested in, I frankly had little time or interest in because my life was about caring for my family. And now, people I meet at this stage of life expect me to be in this empty nest stage and I am not. Our son is here, and most days are good, but not good enough to be living on his own 24/7. This has affected my health to the point where my therapist and doctor agree that the 30 pounds overweight that I now am is from stress and that my body will not let it go because my life is in constant fight or flight. The only medications I take are for anxiety and headaches - both a result of the path that life has me on.

Do I share this all for pity? No, I share this because I have seen a lot of people liking this page and I want you to know the caretaker side. I want you to know that every child with a complex or rare health condition from a loving family has parents feeling this in some shape or form. People tell me I need a break - and I don't even know what that is, because how do I turn off my brain? More than that how do I turn off my heart?