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…

Love begins at home, and it is not how much we do, but how much love we put in that action.  ~Mother Teresa

I just logged in to start my 2015 blogging and found this entry unpublished.  I think it is worth publishing now for my own memory’s sake.  Originally written in early October 2014:

My last post was all about waiting.  And while we continued to sputter along for a bit, a Wednesday a few weeks ago I got a call from my mom.  It was a call I’d been waiting for a long time where she said “dad isn’t going to make it.”

I wasn’t surprised.  None of us is going to make it.  And even though at this time last year my mom came out of nowhere, trying to take the lead from my dad in the race-to-the-top-of-the-most-unfortunate-health-in-the-history-of-mankind, some order was restored to the world when my dad stepped back into that role after he broke his hip.

So, on that Wednesday, we sprung into the kind of action that I’ve come to realize is that of a family that cares deeply for one another.  I got the call in St. Louis at 1:00pm and by 5:30 I picked my brother up at the airport in Kansas City.  We got to the hospital by 6:00 to find our dad in a morphine induced rest.

I put my phone to his ear so both of my kids could talk to him.  They showed so much love to him that I was astounded.  After that call, he woke up for a few minutes and seemed to know us.  He was sweet to the nurse who was taking care of him.  Then he noted some bats in the room.  We corrected him saying it was just the Royals on TV.  I’m now wondering if he was talking about baseball bats.  And then he closed his eyes again.

We spent the next 29 hours with each other and by his side.  We talked to each other and to him.  We sobbed.  We laughed.  We played Qwirkle.  We asked questions of the nurses, of each other, of ourselves.  And we sobbed and sobbed.  We told him we loved him and we held his hand and we told him we were so glad that his suffering was going to end soon.  And it ended a little before 11:00pm on Thursday, Sep 18th.

To me, it was like a small flame flickered out that night.  We had been losing him for a really long time to a body that couldn’t take any more.  In some ways, his death was a gain for him and for all of us.  He gained eternal life and we gained a renewed focus on what a great man he was, in place of the focus on suffering, confusion and uncertainty.

It was a beautiful and sacred process to be with him as he was dying.  It opened a new chapter for all of us.

I’m now adding to this four months later.  I still go to call my dad almost daily to hear his voice and to assure him that we will take care of him and my mom and Amy.  I usually reach for my phone when I have one quick peaceful moment in my day; I never realized that feeling was what spurred my calls to him.  I thought I was trying to ground him in the knowledge of my care for him.  And I know now that he grounded me in my moment of peace – I needed to share that place where god lives in me with him.  I miss sharing that so very deeply, while I am happy that peace is all his.

Let’s go Royals. ~Kansas City fans everywhere all through October

What a loss.

Our dad was an avid royals fan. For us Barmann siblings, the Royals are a part of our hearts and souls, an everyday part of our childhood, as much a part of our family as we each are, and a gift from our dad from further back than we can remember.

Or at least since 1977.

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Robbie Barmann has worn these socks every day since this picture was taken.

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And Jim too circa 1980 and not just because Rob did. Dad must have dressed these guys for their pictures.

Watching the Royals in the post season this October has been incredibly full of joy, especially after losing our dear dad on Sep 18th. In some strange way, it kept us close to him and celebrating all that was good in our family. I’ll remember this baseball season as an integral part of the start of his life in heaven.

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His brick placed at Kauffman Stadium for his 75th birthday in 2010.

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The last baseball game he attended in person, celebrating Rob’s 40th birthday in May 2014. I sat with him that night thinking that it may be the last time. I bought him a cane to take in to the game because he was wobbly and he was so thankful. He was always thankful. He walked on my arm on the way out and I am thankful for that.

I love you dad. You gave us the Royals to love and so, so much more.

What a loss.

The waiting is the hardest part.  ~Tom Petty

There is much to be grateful for and so much I have not had the time to blab out loud.

I haven’t written the huge gratitude post for the week of Cousin Camp 2.0 …2014-07-21 14.11.57

or for our two week trip to Colorado…

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where my heart almost broke watching this gem of a young woman park ranger bestow Grace and Max with junior ranger badges in Rocky Mountain National Park …

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or for the every day blessings of a very fortunate life.

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It has been a whirlwind with back to school and kids activities and One Direction

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and double headers

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and curriculum nights and I even ran in an 82 mile relay race (and laughed all. day. long.; more than I’ve laughed in years), all while Dan was in Scotland and then …

Our dad broke his hip.  And Missy went into labor.  Dad had surgery at the same time that Missy labored.  Mom got filled with enough fluids and steroids so she could be at the hospital while Dad came out of surgery and got situated.  Then she got filled with more steroids and fluids so that she and Amy could travel to St. Louis to see the newest itty bitty with Barmann in her name.

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Elise came home and lives down the street from us.  We couldn’t be more excited to see her grow into a little girl.  It’s an amazing privilege to watch Missy and Jeff emerge as loving, dedicated parents.

Our dad has not gone home because his recovery from surgery is not going perfectly.  It is unclear when or if he will be able to leave the care of a dedicated nursing staff.

The love and heartache that are coming and going all at the same time must be the stuff that makes tornadoes spin.

The thoughts of who will live, (or very morbidly not live?), where and when try to clobber me at many moments of the day.  I know that my family and Missy’s family will take care of Amy in the long run.  There are times when my mind thrashes about because I don’t know what that will look like, or when it will be needed or how it will affect my kids, my marriage, our house, me.

But, it’s not about me.

The universe, mainly in the form of Dan and a big sign that says “It’s not about you JB,”, keeps trying to tell me that it’s not about me.  Earlier this week, my friend Angela reminded me that it’s not about me.  I listened to a sermon that said that it’s not about me.  And through a number of little things that happened that day, it became really clear:

It’s really not about me.  It’s about waiting to do what we’re called to do and doing whatever that is with love.

I asked Dan last night if there are bible stories about people waiting for God to call them to serve and about how they act or feel in that period.  If you know Dan at all, you know that’s kind of funny.  And also if you know Dan at all you know that he told me all about Noah and the Arc in much detail.  And then he told me about Moses.  According to Dan, Noah was confused about what he was supposed to be doing.  And Moses too – Moses was simply saying “you got the wrong guy, I’m inadequate.”  I did some fact checking and Dan was right on.

Dan also couldn’t resist totally making fun of me by bringing up Tom Petty’s expert words on the subject (see above).

I am grateful for the realization yesterday that we are waiting to be called to service.  We are confused and my heart and tiny brain say that I’m inadequate.  I am inadequate.  That’s the beauty of it all.

I’m deeply grateful, in my totally inadequate way, for the knowledge that love and grace is deeper than anything my mind can come up with.  And that when we’re needed, love and grace will guide us through the next steps.

 

I’m grateful for the end of summer and beginning of new things.  Sorta.

As a  swimming pool loving kid, the end of summer is mixed with a real bitter sweetness.   A pool after school is back in session but before Labor Day is a strange place; the heat is still in the air but the life is gone.   The light is even different, lower in the sky as the sun heads back to the southern hemisphere. It is quiet and peaceful and a little sad.   I felt the pang of end-of-summer sadness when I took the kids to the pool after school last week.  It was a jolt in that part of my heart that is still a teenager and took me straight back to the end of summer as a lifeguard: the college kids are gone back to school,  friends from other schools are back to school and the pool is not the center of daily life; it’s an eerie place.   It is a period at the end of the summer.  It’s over no matter how you feel about it.

I’m grateful for that sad feeling and remembering how fun teenage summers were.  Like it was yesterday.

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I’m grateful for Fall Ball.  I think it is the baseball player’s response to that eerie end of summer feeling they had when there were no more baseball games.  Fall Ball!  See, summer’s not over, we’re still playing baseball!  I’m not grateful for how dark it was at only 8:00pm Sunday night at Max’s game.  Also not happy about the 99 degree temps at that hour either.

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And finally, I’m grateful for the return of blankie.  It was lost for more than a week.   We were *this close* to having to say goodbye to more than summer – we almost had to sign off on Max’s little boyhood and welcome him into big boyhood fully.   Thankfully!!!, that didn’t happen.  Blankie was only lost behind a piece of furniture.  I’m not so grateful that no one in this family is thorough enough to have looked behind that particular piece of furniture during the many hours we spent in a search party.  Next time we will create a search map grid and follow it precisely as if it was Max himself we lost.  It would be well worth our time.  I am grateful for the squeal of “Mommy, Daddy, I found blankie!” when it was found.  Oh boy.   I love that kid.

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Some things end, some things never will.  (Dear Max’s Future Wife, please give Max as much comfort as this little blankie has.  It’s all I’ll ever ask of you. ;))

May God bless you with a restless discomfort
about easy answers, half-truths and superficial relationships,
so that you may seek truth boldly, and love deep within your heart.

May God bless you with holy anger at injustice, oppression,
and exploitation of people, so that you may tirelessly work for
justice, freedom, and peace among all people.

May God bless you with the gift of tears to shed with those who suffer
from pain, rejection, starvation, or the loss of all that they cherish, so that you may reach out your hand to comfort them and transform their pain into joy.

May God bless you with enough foolishness to believe that
you really can make a difference in this world, so that you are able,
with God’s grace, to do what others claim cannot be done.

~Francsiscan Blessing

I swiped the prayer from the care site of a friend whose oldest daughter, 9 years old, has been fighting leukemia for 5 years; that’s most of her life if you’re really bad at math.

I am fairly certain I’ve never heard a prayer that rings so true.  I am so grateful for having read this today; and for the words that accompanied it from my friend who said she no longer prays for a cure but prays to feel and not detach from every last bit of her sadness.

Life is hard but not because we are doing it wrong.  Right?  It is full of restless discomfort and holy anger and tears for those who suffer and foolishness to believe we can make a difference.

I have been 100% sure lately that I can not make a difference at all.    So I’m praying for some more foolishness, apparently this isn’t enough:

My feeling towards Dan who ate the last of the granola bars I made for back to school…he’d be a fool to do that again.  He tried to blame Millie.

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And on this topic, our pediatrician explicitly recommends none of his patients go on a trampoline.  Ever.  Well, we think there are way worse things in the world.  Like hatred and sitting on the couch playing video games.  Not that he recommends those things either but we can’t be perfect.  We are full of, at least *some*, complete foolishness.

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To the extent that we are all educated and informed, we will be more equipped to deal with the gut issues that tend to divide us.  ~Caroline Kennedy

Yesterday was back to school for Grace (5th grade) and Max (2nd).
Here’s to hoping that our school will help them grow in the understanding of our responsibility to love our neighbors and to be giving, good Samaritans.

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Our hearts are broken that the issues that divide us are keeping some kids from starting school this week.

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I am extremely grateful for my kids health and friendships and beautiful faces.  I am very, very sad about the state of racial integration and reconciliation in St. Louis and even in our school.

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