Alaska Respite

This week I’m happily home alone with my sweetie, Jasper, as Max and Charlotte cruise Alaska with their cousin, Cecelia, and their amazing grandparents, Papa and Tati. This is monumental. Four months into T1D, my parents (both nearing 80) kept their promise to our children and set sail on an enormous ship and adventure – with minimal T1D training and experience.

Charlotte and Cecilia

 

From the moment I tearily told them about Charlo’s diagnosis, my parents have been stellar. My Dad (super athletic and incredulously diagnosed as pre-diabetic . . . type 2, of course . . . several years ago) immersed himself in T1D knowledge. My Mom, offered heartfelt support from her own experience with a child battling a devastating, life threatening, chronic disease (my elder brother died at 16 of cancer, non-hodgkins lymphoma).

Amazing grandparents!

I can only imagine their incredulity that horror has struck our family again. I’m dumbfounded. It’s thankfully not cancer this time, but T1D has a hell all its own. Imagine your child being hospitalized and told they have a debilitating chronic disease, then released to you to manage said disease for four months without seeing the new doctor, an endocrinologist. Holy shit.

There aren’t many other diseases where people must take rigorous care of themselves. T1D places harsh demands on its victims. No nurse and doctor, administers Charlo’s insulin, monitors her blood sugar levels, rushes in when a low comes, or increases doses when there is a high. We do that on our own, multiple times a day. Every bite and sip my girl takes, need to be carefully considered and compensated for. Her damn pancreas doesn’t work. Never will.

Whose pancreas doesn’t work?

We ruminated about canceling once Charlo’s diagnosis came through, but we all felt it would be devastating to Ms. C and send a terrible message to her brother, Max, and cousin, Ceci. Disease won’t stop this clan! So my parents took on T1D with three days of training to give our children an extraordinary adventure, despite the hardship and obvious connection to my brother’s disease and demise.

Ceci and Max

My parents are superstars. Not only have they given their grandchildren a gift, but they have given me and Jasper a much needed, deserved T1D respite. The strong tentacles of disease have loosened their grip allowing us to appreciate all that we have dealt with and done these past months. I will greedily take what I can this week, as T1D emersion will come too quickly. For now, I will breathe.

 

Loss and Redefintion

My lifelong relationship with loss began when I was almost 10 with my elder brother, Chris’, cancer diagnosis. He battled non-Hodgkins lymphoma for a year with a grace and courage I admired from afar, as he was frequently many miles away at Stanford Hospital. It was a fearful, lonely time as my parents were rightfully consumed with the care and comfort of my brother. Intellectually I understood their absences, but my emotional confusion was ever-present and horrifying. I floundered in the dark. I longed for my family, my parents, my brother. My normal life. And answers to unutterable questions.

I spent my days, engrossed in school grasping at things that made sense: spelling, grammar, history, French, science. At the same time at home I tried – against my younger sister, Katherine’s will – to mother her and be solace to our mom who fell apart. My friends, their parents, my teachers, and our relatives on some level knew what was happening within our family, but no one brought it up. I lived two lives: one of denial and hope for normalcy, and the other witness to the disintegration of my brother coupled with the frailty of healthy individuals and a bereft, disengaged family.

Chris’ death brought new pain and a deeper sense of loneliness. Grief is intimate, defining, and isolating. I’ve embraced self-definition as a sister of my dead brother, a daughter adrift, an inconstant sister to my sister, a soul forever wandering in internal chaos. Wondering what my life would have been if Chris had lived. If we hadn’t suffered.

The many deaths since then of: my favorite aunt and best friend; my wonderful Irish caretaker and surrogate grandmother/mother during my brother’s illness; my maternal grandparents who I was blessed to know will into my late 20s; and my father- and brother-in-law, have at times exacerbated my sense of isolation and sadness.

Yet, I am fortunate. My family stuck together despite my brother’s illness and death. I am able, more or less, to manage my lifelong depression. I am loved and love deeply. I have a second chance at the happy childhood I longed for. I laugh to my core with my children, embrace them daily, hold them close, and acknowledge the gifts they are to me. And try to counter my loneliness with the fullness of their love and sparkle.