The Back Story

I guess, after months of silence, I need to explain that last post.

My father is dying.  Last year, he started treatments for macular degeneration.  Just before Christmas, he got another fairly routine shot for it.  Then we all travelled to Florida to stay at Glen's parents' house for the holiday.  By all, I mean EVERYBODY: my parents, Kelly and Mike and Syd, his parents, my crew...  12 of us under one roof for about a week.  It was crazy, it was wonderful.  Really wonderful.  We took walks on the beach, we played in the surf, the girls sang in their first Christmas pageant courtesy of Grandma Ellie.  It could not have been a better Christmas.  Except for the fact that my dad was having trouble with his vision.  It was very strange, he complained that it was splintered, almost like triple vision.  We all though something must have gone wrong with the MD shot.  Weird and not so much fun, but no one thought much of anything worse.

But it was.  A few days after he got home, the eye doctor sent him for an MRI, and discovered four tumors in the brain.  Many tests and sudden hospitalization later, and he was diagnosed with glioblastoma multiforme.  The cause of the eye troubles is the largest tumor, pressing against the optic nerve.  Inoperable due to location.  He immediately began 6 weeks of radiation and chemotherapy.  Having had Hodgkins many years ago that he defeated, he was actually pretty optimistic about this.  He got through the 6 weeks with very little real difficulty.  Unfortunately, at the end of it there was no improvement.  For me, I think that's when things really went wrong.  It wasn't the diagnosis.  It was that after 6 weeks, nothing.  Depression set in, and the drops started happening.  Plateau, then big step down, plateau, then big step down.  Drops.  Pneumonia, panic attacks.  He started talking about not wanting to live, and the truth is with the loss of his independence, his eyesight, and his short term memory, I have to say I could agree.  His worst fear has always been losing his mind and being a burden, and there are days when both are terrible.  With the panic attacks, he started seeing a psychiatrist.  Drugs were forthcoming.  Some helped generally, but then came some pretty terrible hallucinations where he thought terrorist were in the room trying to get him.  When I started writing this I meant to try and be detailed, but I find some of it has blurred and some I just don't want to dig into.  But so much pain.  Trips home with dread, not knowing what I would find.  Finding each time something unexpected.  Once a broken man who didn't know me right away, one a cheerful man who just seemed tired, it's off, it's on.  What stays is that he seems like a tired old man now.  He sits, he sits.  He is with us, he is not.  More often now, he is not.   I have to admit that some of the trips home I didn't want to go, wondering if I was strong enough to be there.  Each time I leave, I go knowing it might be the last time I see him alive.  How many times can I say goodbye?  I have learned that there is never going to be enough time, but it can be enough.  If all I think of is this moment, this visit, it's not even close.  But I hold onto the fact that he has lived a very long, good, warm life.  He has wonderful friends who even now are there for him.  He has all these good memories: racing, trips, family.  He has been loved, and clearly still loves his wife and his daughter and his sister.  He responds to touch and leans into warmth.  Last time I was home I rubbed his back, and he tickled my daughter.  So each time I take with me the fact that we have had a lifetime to love.  Mom thinks it's important each time to say "I love you".  I do say it, but I don't find it so critical.  I am comforted by years of love.  It could never be said in a few moments, it has all been said.

I am so tired.  In the important ways, I am at peace with this.  Somehow I never believed there would be any miracle recovery.  It's not that there was no hope, but I felt like right from the beginning God was telling me this was it, and that was OK.  This is His plan.  He has never faltered in supporting me and holding me though this.  Once or twice I think He gave me the right words to say for others, especially telling Dad that I believe in heaven and that I am not scared so he might not be scared so much too.  When I thought I would not be enough, He gave me strength to be.  I discovered there can be as much love in offering a bit of strawberry as in a thousand words.  I am OK.  I will be OK.  I am not afraid for my father - he will be going to heaven soon, and gently so.  I am afraid for how my mother will go on.  I know she will, but such fear.  I wish she could be comforted that there is a heaven for him.  I want her to have as much time as she needs to be at peace.  In truth, the hardest part now is how to help my daughter Emma get through this without losing her bright spirit.  She knows he is dying, and it breaks my heart when her grief comes out.  It freaks me out when she loses it hysterically over something like a spilled cup, knowing she is not crying for the cup but for everything else wrong.  I wish my husband could be more there for her, or that either of us understood what to do for her.

My mind is wandering.  Restlessness has set in, exhaustion on its heels.  My days are filled with life and my children, everything else pushed down until those few moments after bedtime, before bed, when I want nothing but to relax and not deal with this not deal with this not deal with this.  And so it comes back, my father is dying.

There will be more words, but not tonight.  Let there be peace in it.

Relentless

My father is dying.  Over and over and over I hear the words in my head.  Random times they appear, catching me off guard and stealing my breath and my energy.  Yesterday I opened a jar of pasta sauce and noticed that the expiration date is September 13, 2013 - my father's next birthday, a day he will not live to see.  My father is dying.  My father is dying.  My father is dying.

At night I hear it in my head and I cannot sleep, restlessly reading until my eyes shut.

There is no rest.  My children take up my time and my care.  What time is left to me slips toward the chant until I cling tightly to something else lest I simply slip away.

There is no rest.

There is beautiful storm outside.  The door is open and I feel the wind, hear the thunder.  I want to close my eyes and drink in the power of the storm, but all the while there is the chant, and the terrible sound of children's TV holding me here.

There is no rest.