The long struggle is over, done, finished. My firstborn grandson, Connor, has died. He would have turned 31 on November 1st. Connor had been ill for half his life, diagnosed, like his father, my son Peter, with atypical Lewy Body Dementia. Peter died twenty years ago when Connor was eleven and his two brothers were nine and seven. Connor died last Sunday, an excruciatingly long time after all food and water were stopped. He had been in hospice for months and, long before the decision was made, he frequently forgot how to swallow, so his nutrition had been severely limited for a long time.

Connor was an intelligent, loving, profoundly difficult boy and man. He was on the spectrum as his father was, and that meant that neither of them ever found productive use for their great intelligence. That meant also that both were challenging sons and siblings. (Even a foster daughter who moved from our home to her adoptive family when she wasn’t yet three has a clear memory of Peter as her tormentor.) Both father and son were complicated and challenging human beings. And both loved fiercely.

One of the ironies of human existence is that those who have the greatest need for love can be the most difficult to keep close.

My former husband died a short while ago, so grandfather, father and son are all on the other side now … whatever being on the other side means. I’ve been thinking about that a lot lately as I’ve waited for news of Connor’s passing. Will grandfather and father be there to greet Connor the way so many near-death experiences report? Will the mind that was so thoroughly destroyed be restored so that he can know them?

Is there anything of who we are that survives the transition? And if it does, does that mean all that made their lives difficult survives with them as well? Or have he and his father emerged to an easier place?

I have no answers, of course. No one does. Not even those who claim they do. Maybe especially not those who claim they do.

Am I grieving? As it was with Peter, the loss has been stretched over such a long time that I can barely feel it any longer. I suspect most of us who loved Connor feel pretty much the same. Except, perhaps, for one, a man who has been a gift in Connor’s life—a gift to the entire family—almost beyond imagining.

Once he was an adult, Connor lived in group homes because his disease was progressing and he needed care and supervision, more than was possible at home. The last group home forced him out by refusing to give him medication to prevent him from spasming, rolling across the floor, out of control, banging into walls. They refused because the medication was known to be addictive. That the patient was terminally ill made no difference.

That was when Mark, who had come to be a friend of Connor’s, took him into his home. Took him in and eventually became his constant caretaker. For more years than I can count, Mark has kept Connor clean and groomed and nurtured and safe. He hasn’t just cared for but has loved this loving, this difficult, this profoundly ill man. And there is no gratitude the family can offer large enough to fill the hole that Connor’s death inevitably leaves in Mark’s heart.

How will we remember Connor, all of us whose lives were touched by his? With love, of course. And also with pain. Relieved that the long struggle is over. Ready to move on. Which we will do carrying Connor with us because he is now part of who we are.

That will be especially true for his mother, my beloved Katy. No mother can lose a child born to her without losing part of herself.

Ten years ago, I asked Connor if he would do some writing for me, and he did. (That’s the main gift I have to bring to the world, supporting others in their writing.) I’ll offer a few of his words here. Connor had poor control over his body, even then, so the typing is erratic, but here are two of his pieces. Unedited. They are clear enough as they are.

Why...

i asked this many a time...
Why...must i struggle
Why...must i hurt
Why...must i be powerless
and i could give some philisophical malarkey...but i won't just the truth...well my opinion of teh truth
life is dark, and cruel, and unforgiving, and full of seemingly endless trivial trials
but that is the bueaty of life, it is unfair, unbiased, unfeeling, uncoruptable..,
you can't bribe it, coerce it, intimidate it, no amout of begging, pleading, nor grovelng will change it's actions,
what has been done will stay done forever etched in time...but the future, that is a differnt story,,, the only gaurrantee is death...
that means at any given moment you have the power to chose, one constant, one variable, what you do, how you define your being...
will you be kind, will you stand up, or back down, will you show compassion, tolorence, or will you do the oppisite,
your are difined by the choices you make... and this defines your legecy...

So Why... who knows who cares just remember
Laugh
Love
and above all...Live

And this one:

-Why I am-
why i am who i am is noti because of me
i owe it ti thise whi taught vakue to me
the ones i call mom and dad
the ones who created me

mom you taught me peservernce, no mattter the battle i am to face
you taught me compassion, and to know others and myself
you gave me kind heart and my drive to be the best that i can be
you are my mother and no one else can be

dad you showed me how to laugh, taught me how to find a light in the darkest days i had
you gave me a respect for life and a code to keep me straight an on the narrow path
you forged the plan for me ho to be the man i want to be
dad even though you left this world well before i was grown you still did your part in molding me

Now i am a young man just 21 years of age
fighting every for every step i take literally
but ill be okay for you have made me strong, stubborn and your son of that im proud to say

Connor Dane Bauer

All the Love in This Trembling World