Here’s a quick glimpse into how these posts come to fruition. Someone will say something to me, or an event will happen, or I read something that sticks in my mind as something to write about.* Then it tends to sit for awhile until another precipitating event sparks an idea that ties to the ideas living in my head, and then prompts me to write. Such an event happened last Wednesday.
*Believe it or not, given the paucity of my posts, I have probably 25 different blog ideas living in my head at a given time. If I ever returned to my disciplined writing days of the early moments of this newsletter, the posts may come fast and furious. Or, I will continue writing infrequently can spend much more time thinking about writing.
During the summer, my brother and his girlfriend visited us in Connecticut for a few days. We had spent time with his girlfriend before, but this was her first extended exposure to the Cookson madness. At some point, after seeing everything involved in the Declan experience over several days, and hearing about the various therapies, school supports, friends, and helpers we have she noted something about “what a great community” we have around us.
A funny thing about that community — a word I’m now using to describe the various people, places, services and activities we have found in support of Declan (and Rory) — is that while we are aware of it, it’s also easy to take for granted. And to still feel like it’s insufficient. Such is the challenge and the life of having a child with Declan’s needs. There is no level of community that can ever balance the playing field enough to not make this incredibly damn hard. So while we are immensely grateful for the support we have, there are still many times we feel very alone. That is an unfortunate reality — but today I’m choosing to focus on celebrating that community, and the kindness that abounds within.
I pick Declan up early at school on Wednesdays so he can go to therapy. Last Wednesday when he came out with one of his paras he was wearing a brand new hardhat and an enormous smile. There is construction going on behind his school this year, and as a reward when he does his work he’s been taken outside to watch the construction. I don’t know how often he gets to do this, but I have taken him to similar outings enough to know his reaction whilst watching the construction was one of utter enthusiasm and glee. Which prompted a moment of wholly unnecessary kindness. When Declan came out to view the construction last Wednesday, the foreman (whose name I later learned is Joe) gave him his very own hardhat with “construction inspector” emblazoned on the front. Because of course he did.
This is the moment that sparked my memory of the community comment, because it speaks to the support and kindness that seemingly constantly surrounds our big D. His school team know the things that interest him, and recognize the benefits of rewarding his work by letting him go watch some diggers. None of that is a given when we send him to school every day, and yet it’s the sort of thing we’ve come to expect from his Elementary experience. And then there is a random person who chose to extend some kindness in his direction, maybe because he could sense the sort of smile it would provoke. It’s the sort of gesture Declan’s spirit and energy bring about far more often than we have any right to expect. Even if he looks a little terrified in this picture!
That is just a small part of Declan’s community. Yes, that community comes with a lot of caveats. As grateful as we are for everyone and their efforts, Caryn and I frequently lament (to each other) we would trade all that in for Declan to have a typical life. That’s simply not an option. Yes, there are times when even our wonderful community doesn’t feel like enough, and those days and moments are really hard. Today, I’m choosing to celebrate the moments when it IS enough, when the community does more than we could ever reasonably expect and helps make Declan’s daily life the best it could possibly be. That is a gift worth celebrating.
We are so grateful for the many "Joe's " in Declan's life. Grammy Cookson