Elevator speech to a close friend

Coming up on a month after Dylan's passing, I find myself having a hard time determining which of my endless bank of emotions to tap into for this blog.  Each of them will have their day, I am pretty sure.  But, I do find an ease in communicating about Dylan in emails with long-distance friends, close colleagues, and the like who send their condolences.  I think I have an easier time expressing myself freely, without self-editing, in these emails than when I am blogging.  I don't worry about being unoriginal, boring, or just plain being a downer.  So, this week, I thought I would leverage that ease and post a recent response to a friend. 

With regard to the post title, I find that the cadre of tidbits I share with others about Dylan's life have started to form sort of a standard delivery, which is another way of saying that I am repeatedly eulogizing Dylan, I guess.  Perhaps they are the aspects I'm most proud of and eager to share, as his mother and chief caretaker.  They are indeed the most joyful ones.  Either way, they are sincere and, I suppose, what would come from my mouth naturally now if I were asked about Dylan on an (extended) elevator ride, which seems much nicer than to call it a eulogy. 

Dear Friend,

I truly appreciate your caring words. I'm sorry you had to hear such sad news--but I guess I can't really shield anyone from it. Given that many children with SMA don't even make it to two years, we feel like our story is much happier than many others we've heard. We had two wonderful years and 18 days (albeit the last days were mostly spent in the hospital), and although we had to watch him decline in movement, feeding and breathing ability, we did not focus on that from day to day--at least not in the last few months. Last December, he went into the hospital for pneumonia, and the doctors thought we would lose him then, but he proved them all wrong. With some non-invasive respiratory help (via bipap respirator) mostly at night and during naps, he was able to thrive for 10 more months--and it was at that point last year that we really learned to celebrate his every day and what he could do, rather than fret over his condition and "limited prognosis," as the doctors would call it.

You are so sweet to say that he was lucky. I don't know sometimes if I did enough. I tried my best, along with my husband, Colin, and the grandmas, to focus on loving him, giving him all the support he needed to stay safe and comfortable, and giving him nice experiences. He got to go to the beach two times, and he floated in the pool a lot. We took him for walks and used a hammock indoors and out. He got to watch more cartoons than most parents permit, and he ruled the iPad (with our help). He had to endure watching us make silly fools of ourselves just to make him smile, but he seemed to tolerate that alright. He watched anything with monkeys and made high-pitched, gleeful noises, even after he lost the ability to form words. He was an utter joy, and I believe that now he is without bounds--which eases the pain somewhat.

Okay, so I've gone on and on, as I tend to do when it comes to Dylan.  Thank you again for your kind words.  It's not the choice of words that provides comfort, but that you chose to send them at all. Take good care, and have a wonderful holdiay season with your family.

 

Best wishes,

 

Teri, Jason, Colin and angel Dylan, forever 2