Your problem is how you are going to spend this one odd and precious life you have been issued. Whether you’re going to spend it trying to look good and creating the illusion that you have power over people and circumstances, or whether you are going to taste it, enjoy it and find out the truth about who you are. ~Anne Lamott

After I had kids, I accepted the truth that I am not perfect at anything at all.  In fact, I’m mostly fairly shitty at many, many things.  What I knew after having Grace and Max was that it doesn’t matter because my job is to love and hug and cheer and read and advocate and create a safe space and provide food and shelter and experiences and there is no exact right to those things.  I figured out that if we’re honest, most everyone else is wrangling to be ~good enough~ too.  Thankfully.  I thought that parenting was the ultimate humbler.
When both of my parents ended up sick at the same time– and since most of you already know that I mean sick to the point of the end hanging, hovering, creeping nearby, really nearby, for a long, really long time —  there was a whole new chance to be humbled.   If you’ve ever wanted to find out the truth about who you are, join a family with two dying parents and a special needs sister.  Try it.  I dare you.  [<—-And that attitude right there, that was part of my problem.  It seemed like our situation was unique, which created a very isolated space in me.]

All of the above was drafted on 28 April because I had a very humbling revelation that day.  But I didn’t finish it because it has been a hell of a year and my thoughts don’t come out whole.

And then, on 4 May, my mom died.

She lived right up until the moment that she died.  (That sounds ridiculous when I re-read it.  It is profound in my head.) Her death was in some ways the opposite of my dad’s.  He dimmed out over many years; his body giving up more and more while his spirit did the same in parallel.  She refused to accept the disease that infested her and it refused to accept her refusal.  It was a boxing match where each opponent kept getting knocked aaaaaalllllllmost aaaaaalllllllll the way out and then kept. getting. back. up. and taking another swing.

Watching this fight was hard for me.  I struggled for months to get through each day with the weight of how to truly love my mother and honor her and provide her comfort and peace and the right medical care.  I dug deep for ways that would serve us both long after she was gone, all while she was dying in front of my eyes.  And while we tried to find the best care for Amy and we tried to still love each other and I tried to still be a mom and wife and friend and colleague. It was tricky too, because, as it turns out, dying for her did not look like I expected dying to look.  I expected days or even weeks sitting by her bedside, coordinating with hospice and family and eventually watching her go.  But since I don’t have power over people or circumstances, it didn’t go as I thought it would.

My mom’s dearest friend was being given a retirement party in Kansas City on what turned out to be three days before my mom died.  So we drove on a Friday afternoon from St. Louis to Kansas City.   But only after she spent the morning in the cancer center getting fluids and blood.   And this was two days after her oncologist had asked if she was ready to be done.  She was not.

The trip was incredibly hard — she could barely walk — everything was painful and a strain.  She changed her outfit in my car and was out of breath and reeling for 30 minutes after.  But she wanted to go and didn’t complain. She wanted to live.

I complained: in my head, to friends, to family, to my spouse and kids and to God for being a jackass and not making life and death a breeze just at least this one damn time.  Who do you think was really the ass in that conversation?  At that point in time, I found myself in a total frenzy.

It turns out that my feeling of frenzy and insanity was actually grief.  The grief of watching someone die and having no idea when her spirit would lose out to her body; having no idea how much longer she or any of us could take it.  Dying for her wasn’t laying in her bed surrounded by family while we held hands and read poetry about heaven and told each other how much we loved each other.  Nope.

Dying for her looked like getting to a party across the state on time and talking and laughing until late at night.  It included having a big breakfast with our best family friends and laughing so hard our stomachs hurt and then driving back to St. Louis, but only after driving past our old house and my dad’s space at the cemetery.  It looked like someone who was at peace after visiting her home and friends of the past 50 years.  And then ordering clothes for grandkids online and personally delivering a plant to me and Dan for our anniversary.  It included going in for a procedure that couldn’t be performed because she was in too much pain.  And then heading to the ER, getting pain meds that calmed her and put her in a restful state; hearing the first sentence of the last rites and quietly taking one last breath.

When I started this post, it was about a revelation I had (with help from a quiet expert) that I had a choice in this odd and precious life.   In the struggle of the past many months, our friends and our community have showed up repeatedly, asking to help, offering to help, begging to help ease our burdens and pain.  Along with the struggle of grief, I struggled mightily with what kind of help to accept and with being overwhelmed by feelings of being insufficient and being weak and indebted.  And I struggled with feeling alone.  I thought that our situation was too awful and messy and that I was too awful and messy to let anyone see it.  I tried to push off offers of help because I thought there would be a time we would REALLY need it.  You know, for the time when we were going to be sitting by her side 24×7 for weeks on end.

I was losing my mind with frenzy and guilt and shame and isolation.  Simply stated, with grief.

Luckily, I learned that I had a choice: to either be overwhelmed and frenzied and alone with how hard things were,  or to accept offers of help and to be overwhelmed with GRATITUDE.  GRATITUDE, not guilt.  GRATITUDE.  I had thought my choices were to suffer alone or to feel guilt and indebtedness for accepting help.   I guess, in a way, they were.  But to be indebted is to be in a state of gratitude.  Indebted actually means “owing gratitude for a service or favor”.  I was simply stunned at the flip of this concept: being overwhelmed with insufficiency and indebtedness was the other side of the coin of gratitude.

When it was pointed out that I could choose to be overwhelmed with GRATITUDE, I felt that I had never in my life heard words that were so true to the core of me.  It shifted pain into a space of truth in my heart.  I was humbled in a way that I can not express.  I can live in a state of gratitude.  I can not LIVE in a state of isolated grief.  I can’t always reciprocate support the day after it is provided to me, but it can be my life’s work show my gratitude.  Looking for ways to show my gratitude turned the grim world I was living in upside down.

So this is a very, very, very long story to say that through the past year of life and death, I have found out a truth about who I am.  Gratitude is the lens that makes sense of the world to me.  I knew that (see my series of gratitude posts) and I had forgotten it.  I have been humbled anew.

I can’t try to look good and create illusions and control – I can taste, enjoy and be overwhelmed by gratitude.

PS I also began to believe deeply through this past year that pain is common among all people.  It looks different for everyone but I suspect it feels the same and it is inescapable.  That thought is for another day…