T: Tom, Too Late, Thanks

T stands for a lot of things this week.  In the original NOTDEADYET acronym, T stood for Thank everyone, everyday, for everything.

But as you’ll see, T also stands for “too late” and now, for “Tom.”  I wrote the following on the flight home, after spending the week with my family following my brother’s death:


I am very sad to write that my plans for visiting my brother in hospice are not going to be realized.  Tom died last Friday night, a week before I was to go see him.

As the next blog post was scheduled to be concerning gratitude, I’ve decided to write about how much I appreciated Tom.  Too late, perhaps.  But maybe not…maybe he can read these words as I write them.  Who really knows?

Tom was my lunch buddy when I was young.  Back then the terror threat level was much lower, and kids were actually allowed to leave campus for lunch…to go home, to go to the nearby hospital cafeteria, or in my case, to go eat lunch with your big brother.

He was “in between” high school and college and was living at home and working at my father’s monument business, carving and setting tombstones.  I think he knew that I was having a rough time.  I was “Bub,” the young, quiet kid who watched her parents in daily anguish over sick children and their unknown futures.  Going home to a mother who was severely depressed was often not the best option, so Tom was sent to deal with me.

I don’t even remember what we talked about back then (this was forty years ago), but I remember the camaraderie…the company…the understanding.  We both had crabby pancreases (or is it pancrei?), with resulting malabsorption that meant we were always hungry and LOVED to eat.  Neither of us particularly loved the next morning, but we were willing to deal with it.  We would gorge on fried food and mild shakes, then he would bring me back to school and he’d go back to work.  We shared a junk food pact.  It was a “don’t ask, don’t tell” agreement.  No one knew about the Kentucky Fried Chicken and pecan pies except us.

Tom was quiet back then, but I do remember that I could talk to him about my concerns as a kid…a sick kid…with a sick mom.  Ours was a heavy scene at home.  Worry was always the theme of the day.  Tom shared with me the realization that the health issues we (and our sister Kathy) were born with were the major source of the anguish.  Neither of us could do anything about it, and we shared that frustration.

He was quiet back then, and he died a quiet death.  There was no drama.  There was never really any drama around Tom.  He was an amazing source of strength in his silence.  He stuttered along at a lung function that barely supported life for over 10 years, never complaining once.  Whenever I would talk to him, all he wanted to do was turn the subject to me, and how “my CF” was doing.  The last conversation I had with him was over Skype, when he was in the hospice house.  He could see me and I could see him.  I was showing him pictures, and holding my dogs up to the computer to say hi. I (we) got the chance, via technology, to be there without really being there. Even then, when he was clearly dying, he asked how I was, concerned because I had a PICC line for IV antibiotics.  This was Tom.  His focus was always on the other person.  He took care of his friends, needing to be a source of strength, because he knew that this fed his own strength and resilience.

I chastise myself now, because I know my own fear of watching his decline kept me from knowing him better as we grew older.  It scared me to see him get smaller, and weaker, and struggle more and more to simply breathe.  So, I retreated to the safety of denial, 2000 miles away.

Even though I never told him directly, I am forever grateful to this big brother of mine.  He spared me lonely times as a child.  He paved the way for me, living so much longer than anyone ever thought he could, so that I am no longer in doubt that I can do it, too.  He was a gentle giant of a man.  I will miss him.  He is somewhere more comfortable now, hopefully hanging out with Kathy, and I hope he can read these words.

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