Grounded
As school ends this week it’s hard not to have a mix of emotions -it is certainly not how we thought the last few months of kindergarten would go and now as we look towards summer it’s hard to know how to feel.
Will we still get to feel the magic of summer- even in this pandemic? Can we relax just a little- unwind and take space to heal from the stress we are all living within? I wish I could say yes- I hope it’s true.
When I was growing up summer meant camp- days of fun with friends and counselors -feelings of a community grounded in supporting each other - as we learned lessons about friendship, pushed ourselves to try new things and sang and laughed our way through each day.
As the Mom of a child with rare diseases I never new what would be possible. If we would ever find a way for our son to experience school or camp like “normal” kids. I remember when he was a baby thinking how hard it would be with so many exposures and things to control - how could it ever be safe? And perhaps even more- how could I ever trust someone other than family to care for him.
But even while it seemed scary and at times impossible I knew that he needed a chance to have these experiences and more that he needed to learn his diseases must never hold him back. A lesson forever ingrained in me and is the way I live my life.
Thankfully, I learned that while not everyone could handle us - and yes it’s very clear when I’ve overwhelmed a school or camp director - if I looked hard enough there were actually people willing to - to learn about our diseases but know that they alone do not define us - and that with their partnership we were able to create a “normal” experience for him. So many days when I look at what he’s done it feels like I’ve made the impossible possible.
I can remember the first day of each milestone so vividly - even with my extensive preparation -each time feeling like I was jumping off a cliff with my eyes closed hoping we’d land- and thankfully we always have- in truth I knew we would.
But it was perhaps last summer, when it was time for him to go to a real summer camp - outdoors all day- heat and bugs and swimming pools and lots and lots of unknowns that felt the most terrifying. In a million years I didn’t ever believe we would pull this off- but similarly couldn’t give up my dream of him experiencing the magic of being at camp!
Amazingly we found a willing camp director and after months of plotting and planning we found a way to make it work -and despite my terror I took my greatest leap of all. I cried as I drove away after drop off on the first day- after he cried being pulled from the car. I knew we both were pushed out of our comfort zone but I also knew in taking the leap he would feel and know the power of camp- and he did.
On Friday we learned his camp would indeed open this summer- a sixteen page handbook on COVID-19 policies and safety procedures was attached to the email but for the first time ever I cannot figure out how to make this safe. As every friend texts me saying they are signing up I feel more and more defeated as I realize that no amount of planning can make this possible given our chronic diseases -and yet I am having the hardest time saying no.
Of course, I know so many others are also making this decision and there will be other summers with camp, but it’s still hard to have to admit our decision is grounded in the diseases we work so hard to rise above. I remind myself that it’s OK to say no-that it doesn’t mean our diseases won- it is just part of knowing when it’s worth pushing ourselves off that cliff and when it’s not. So this summer, as much as I hate to admit it, I can’t guarantee a smooth landing so I know we’ll have to wait to take that leap until we can.
