While going through photos recently to find some baby photos for end of school yearbooks, (a 5th grade yearbook? I’ll let let you guess my thoughts on this one), I happened upon the picture posted with this blog, of myself and my five kids. We were on a day trip to Boston, I think we were in a T station. I found myself fixated on the picture, trying to see just who that frazzled woman was with the five young children? I can honestly say I don’t remember a lot of their childhood, so am glad to have the pictures. I was overwhelmed, to say the least, with their care. Three of them with Tuberous Sclerosis Complex (google it), were in some sort of medical crisis which seemed to ensue almost bi weekly. These medical crises were serious, as in ER ambulance, seizure sort of crises, as well, included many specialist visits and frequent hospitalizations. My oldest son, of whom I did not have custody, was living across the country with my first husband, and only visiting over the summer. My youngest, a typical child, was the final act, the clean up crew, and my little cling-on, barely a year old in this pic. Thus, it was rare that we were all together like this in such “fun” circumstances.
I thought I was keeping it all together, I wasn’t drinking heavily at the time, that was to follow, but I was attempting to maintain an appearance of being in control and on my game. The picture tells the story. I look frazzled, exhausted and goofy..as we mom’s tend to often look, but I was not in any way pulling off the “in control” thing, as much as I thought I was. The cost of these years was great, but not unsalvageable. The 3 kids with TSC’s precarious medical state has stabilized over the last few years or so, though it will always be present . My oldest is married, in China teaching and my youngest is thriving in her role of, well, youngest.
Much has transpired in our lives since that day, yet it has taken me until quite recently to really deeply grok the lessons I was learning at my own hand and that of the cycle of life. We are all the culmination of our genetic code as well as our life experiences all handed down age after age, back to the days when we were part of the stars….to quote Carl Sagan, “We are a way for the universe to know itself. Some part of our being knows this is where we came from. We long to return. And we can, because the cosmos is also within us. We’re made of star stuff.” Additionally, recent studies in the field of epigenetics sheds some fascinating light on the possibility that humans have inherited generations of fears and experiences, not only hard DNA coding. To me, this smacks of a crossroads between science and spirituality. Impermanence with meaning.
Recently, I was able to watch the Boston Marathon live, from the streets of Natick. What a fantastic experience, all around. However, what I wasn’t prepared for and what I most valued from the experience was seeing the wheelchair racers, the people with one leg and a prothesis and even no legs, the runners pushing their severely disabled loved ones, and the blind runners, with full faith in their running guide. It was moving on a level I’d never imagined. Such courage in the face of overwhelming and seemingly discouraging circumstances is always inspiring and I am sure there is a full novel behind each of those participants I witnessed. A lot of them were smiling. There were men and women with no legs, blind, withered legs, no arms, the full gammit, gliding through the streets with joy! I felt grateful to witness this. What a gift life can be when we remember who we are and cherish every moment, not in an unrealistic way, yet open eyed and steeped in reality.
So, my story is that I get the opportunity to be a guide for these precious souls I call my children. The brevity of this time I get with them is never more poignant than when I find a picture such as I posted here and get a glimpse of the past, a flicker, an impetus to remember, through even the terror, turmoil, heartbreak and pain, it all passes and what we are left with is today. Now I can put two and two together and remember that girl in the picture with the five kids, as part of history. For that I am grateful.
“Sometimes I need only to stand wherever I am to be blessed” Mary Oliver