It’s been a tough few weeks here. Two people that I love dearly died recently. That’s such a final word, died. Letting go is so very hard for the Earthbound. Two strong supporters of what we’ve accomplished here, keeping Sophie happy and alive. If you’d asked me a few years ago, I’d have said that they would have seen many more years beyond Sophie. You see, Sophie hasn’t got a clear prognosis for how long she will survive. It doesn’t seem fair. And yet, both of them wouldn’t have wanted it any other way. I envision them looking down on Sophie and smiling-maybe that is why she is so happy these days. So many guardian angels to hold her up.
As the years go by, I’m struck by how long we’ve been doing this crazy, sometimes horrible, but always wonderful life. The people we’ve met, the people whose lives have been touched. Some have stuck with us, some come back after a time, and some touch and move one whether it’s their or our choice. But to know Sophie and our family it’s hard not to be touched. The years of struggle show on our faces, our graying hair, our bodies that don’t work like they used to. You physically and mentally lift someone, live through more than one’s fair share of health crisis’, lose sleep for 19 years and it’s going to show up in interesting ways. I feel like I’ve acquired a certain amount of grace from the amount of tension that has been placed upon my shoulders. That grace I believe was inherited from a family who bends but does not break most of the time.
Being in the distinct group of families with special needs kids, I’ve unfortunately know all too well the collective sounds of hearts breaking when children die. It’s inevitable in the world that I live. It hurts every time. And I know that at some point this will be our passage. We’ll then be in that group of families who have lost a child. In many ways we have been preparing for this for a long time. Hopefully with a lot of work, love, and strength that day is in the far future.
I’m living those years when it’s not all that unexpected for elders to move on, and your contemporaries begin to leave. And yet it feels like yesterday these amazing women were an integral part of my life. I can still hear both of their voices, both of their laughs, each one distinct and cherished. I hope I never lose that echo of their love.
You both will be missed so very much, but your memories live on in how you touched me, touched our family, and touched Sophie. Dorothy left us with a message. It was her password, “live life”. And so we will.