Thanksgiving

Things I've had to ignore this week:

• The fact that my jeans are too tight after a monthlong potato chip binge, each chip an attempt at distraction from the fact that Mark's been dead for four years.
• My friend pretending to shoot herself in the head to make a point about being frustrated.
• My heart squeezing upon hearing the laughter of my older kids home from college, their presence making it harder to ignore Mark's absence.

But I'm thankful. Thankful my potato chip fixation has diminished. Thankful for my friend despite her thoughtless attempt at humor. And so thankful for these kids of mine.

Breathe

A very difficult year is finally over, what should have been Mark's senior year. His friends have all left for colleges around the country. I won't have my breath taken away when I see them in person and realize how much they've grown. I won't have to listen to their happy parents discussing college acceptance letters. And I can go to the high school and not be slapped in the face by what they're doing that Mark isn't. It was a year to be endured, culminating in me sending very late graduation cards with heartfelt wishes for his friends to go out and be the best they can be. It hurts to think about all the things Mark isn't doing, but I sincerely want his friends to live wonderful lives, especially knowing how his death might have shaped their high school days.

Saturday is Mark's 19th birthday. How can that be? The anticipation of the day is the hardest part. I feel unsettled, erratic, like I want to yell at strangers for no good reason, smoke cigarettes, blast AC/DC and Aerosmith until the neighbors complain. If past years are any indication, I should be back to myself by Sunday--quiet, non-smoking and polite.

This doesn't get easier, you just figure out how to live with your heart split wide open. How to protect it. How to avoid those who can't see it. How to surround yourself with those who can. How to fall into the grief hole, climb out, brush yourself off, and breathe again.

I'm in Vienna. Why, you ask, are you in Vienna? I'm meeting my oldest and her university choir here later today, and then on Friday she and I will go on to Germany to stay with the family of the German exchange student who lived with us five years ago. We have a tradition of taking the kids on a trip somewhere in the US one-on-one with either mom or dad when they turn 7 and 15, and now, apparently, we're setting the precedent that at age 21 you get an international trip. That's fine by me!

Until the choir arrives, I'm touring Vienna alone. It isn't the first time I've been alone in a European city. In college I visited a friend doing a semester in Rome. She had class during the day, so I saw Rome by myself. And when I went to school in Japan, I spent plenty of time wandering around both Kyoto and Osaka alone. But I was younger then, and invincible. Now I'm old and a little bit scared. I've had to reawaken my self-reliance and tap into my forgotten invincibility. When I arrived safely at my hotel yesterday, I patted myself on the back for successfully getting myself on three different flights, and then finding my way to the hotel by train and subway, pulling a too-big blue suitcase behind me.

Back home Mark's classmates are preparing for graduation in a couple of weeks. I don't know where I'll be the evening of graduation, but I do know I won't be anywhere near the high school. My heart can't take seeing happy families celebrating what we can't. Envy is an ugly emotion and the one that has surprised me the most since Mark died. I should probably talk myself out of it, but like other emotions I've experienced the last 2 1/2 years, I just let it be. These days I'm most comfortable around people who live with their emotions openly and honestly, and who give me the grace to do the same.

For the next week, though, I get to enjoy Austria and Germany. I'm not sure I could ask for a better distraction from what can't be. Prost!

Rotting Vegetables

Another cucumber went bad in my fridge.

It's a symptom of my brain not working.
It's evidence of my inability to plan meals and execute that plan.
I forget. I forget that I have fresh vegetables. I buy fresh vegetables like I used to, before when my brain worked, when my brain had room, room for things like a mental inventory of the fresh fruits and vegetables in my fridge.

I'm at the store nearly every day buying that day's dinner ingredients because I can't plan ahead. But some days I get overconfident. I buy like I used to, but I have no plan, and so I forget.

There's asparagus in there, too. I was going to make it the same day I bought it, but when I got home, I forgot. We had leftovers and hot dogs for dinner that night. Now the asparagus is limp.

Grief lives in my refrigerator as rotting vegetables.

Grief is like . . .

Grief is like a colostomy bag.

It's this thing you carry with you, tucked away, hidden.

Ever present on your mind, distracting, demanding.

People who know about it don't talk about it out of politeness.

People you've just met get uncomfortable if you mention it, so you learn not to.

You can't blame them for not wanting to hear about your shit.

Grief, grief, grief

Grief is boring. My blog is boring. Who wants to hear one more word about grief? I know I don't.

But I can't get away from it.

My primary identity is as a grieving parent. I don't remember feeling this way about other difficult things I've dealt with. I'm the parent of a child with Down syndrome, but it's never felt like my primary identity. I'm a cancer mom, but, again, it's never felt like my primary identity. But this? This is huge.

Mark died over 20 months ago. That's a long time. And no time at all.

If you've never lost a child and you think you can possibly imagine what it's like, you can't. It's like trying to explain to expectant parents the amazing feeling of love you have for your own kids. You can't really understand it until you experience it.

There's little that interests me these days. I keep my family loved, comforted, fed, and clothed. When I'm not actively engaged in any of those activities, I just exist. Joy comes in little bursts, and then it's back to the grind of grief. Not crying all the time, just weighed down.

Grief, grief, grief. Ugh.

No Happy Ending

Everyone loves a good story. People gobble up tales of those who overcome adversity. You see it on magazine covers, hear it in the "feel good" stories on the news. Some sort of difficulty is faced and overcome, the person learns a lesson, grows, and is changed for the better. I often listen to Christian talk radio in the car. It seems recently the programs have all featured people who've had bad things happen, but who are now able to share how God saw them through, a neat package of adversity tied up with a big bright bow.

Three weeks before Mark died I spoke at a women's retreat. I told the women about the times I faced adversity and how I grew with God's help. I told the story of my husband's mom coming to live with us, how we felt it was the right thing to do, but how it was very difficult to carry out on a daily basis. I told them how things started off great, then went sour, but how my attitude changed and I came to appreciate her. I was also able to tell about John's birth, how hearing the words "Down syndrome" knocked the wind out of me, and how I felt God revealed to me the blessing John is. I challenged the women to seek God and trust in him. Happy, happy.  Adversity overcome. Yada, yada, yada. It all feels like a cruel joke now.

The morning of the retreat as we gathered, a murmur went through the group when one woman came through the door. "I'm surprised to see her here," someone said. When I asked why, I was told her adult son had taken his life that week. I knew I had nothing to offer that woman. All my happy talk about overcoming adversity couldn't touch what she was going through. As I spoke I specifically avoided making eye contact with her. What did it feel like to lose a child? What did it feel like to lose a child to suicide? Little did I know what lay ahead for me.

So here I am nearly 17 months after my own son's death, February conveniently including a 29th this year so I could properly count the month. I am stuck in my adversity and see no way out. I wrote before about hanging onto my faith, and I'm trying, I really am, but I'm angry at God. I don't think I'll ever be able to talk about this event with a positive twist. Could I tell a nice group of women at a retreat on a Saturday morning that I cuss like a sailor, that I use the f-word freely, that without it I feel unable to properly express my continued bewilderment and incredulity? Would any nice Christian want to hear from a woman who's abrasive and coarse?

There's nothing happy here, no positive twist. There's only broken and frustrated and sad with the ache of missing, missing, missing.

Letting Go

I've come to realize that the only way to go on living without being debilitated by grief is to let Mark go. Last year at Christmastime I could have told you what he wanted. This year, I didn't know. What new interest would he have discovered? What new gadget, trend, or sport? I don't know. I don't know because Mark is gone.  Just gone.

Every day I wake up and he's not here. Letting go feels like sawing off a limb in slow motion. Every single day.  Saw . . . saw . . . saw. He's not here. He's not coming back. He was here and we have great memories, but we're not making new ones with him. We're making new memories without him. That hurts like hell.

Every day I go about life the best I can, still weighed down by grief, trying to move on. Saw . . . saw . . . saw. I have the sense that people around me expect more of me.

Every day when you get up and enjoy your morning coffee, I'm here slowly sawing off a limb. You head out to face the day with the buzz of a little caffeine. I head out to face the day with the pain of the sawing still throbbing.

Birthday Oxygen

Today I remember the day 17 years ago, almost to the minute as I sit writing this, that I gave birth to my second child and heard from my husband, "It's a boy!"

Mark

This morning I went to walk around Lake Harriet, a place full of warm memories both old and new, on a day of beauty in direct proportion to my heartache.  How can the world be so achingly beautiful and Mark not be in it?

I passed the usual bikers, runners and walkers, the mothers with babies in strollers, the elderly on benches.  I passed toddlers whose parents waited patiently as they made their way down the path.

The airplanes fly low over the lake just a few miles west of the airport, and while some might find their noise annoying, each one makes me smile.  After passing over Lake Harriet they go on to pass over my childhood home, lower and louder, their familiar underbellies a testament to man's optimism.

I passed dogs of every variety, one so covered in fur I could barely tell his head from his tail.  I got to stop and pet an old basset hound lounging in the grass with his owner.

I passed an acquaintance who told me last spring she had lost a one week old baby to SIDS many years ago.  I would have said hello to her, but she was sitting at the water's edge laughing and chatting with a friend.  She doesn't know she gave me hope today.

Life and hope all around, and me with tears streaming down my face.  Like folding laundry and doing dishes, walking is something I avoid because it gives me time to think.  And when I think, I cry.

An older man on a bike rode past.  He was in a group of four and as he passed he turned to one of his companions, said something that made him chuckle, then looked at me with a big grin on his face.  I was impressed that a man his age was out riding his bike around the lake.  I was even more impressed by the oxygen tank strapped to his back and the nasal cannula across his face.  He's who I want to be, I thought to myself.

I will always celebrate this day.  I will always remember how my hospital room filled up with well wishers 17 years ago.  But on this day in 2015 I claim oxygen.  I claim God as my oxygen.  I claim my family, my husband, and each of my sweet babies as my oxygen.  I claim my extended family and the many, many loving friends who have reached out since Mark died as my oxygen.  And I breathe through the tears trying to hold onto the hope of better days.

My Kryptonite

Gangly teenaged boys will forever be my kryptonite.  Seeing them brings me to tears.  There's the one who took a whole flight of 5 stairs in a single leap as I entered a hotel on my way to a fundraiser.  There's the one I followed at the Mall of America who was wearing Mark's clothes and could have been my son from the back but for a couple of inches in height and bad posture.  There's the long-limbed one who checked me out at Target, his pimply face a familiar sight.  Their mothers don't know how lucky they are.  They get to see their sons mature into young men, to marry and maybe have kids of their own.  What I wouldn't give to see Mark as an adult, to see what he would have accomplished, who he would have been.

During the school year I learned to avoid doing errands on weekends when teenaged boys were out and about.  I only ventured out on weekdays when I knew they were all tucked away within school walls.  But now it's summer and they're everywhere, and I forget and find myself trying to control my breathing so I don't break down in public.  I'm only safe early in the morning when their teenaged selves are still asleep.  I'm looking forward to school starting again.

I miss my boy.  I miss him, miss him, miss him.  And no amount of missing will bring him back.

Unholy Mantra

This might seem like a strange follow-up to my last post, but in the interest of keeping it real, here it is.

WARNING: If you're offended by profanity, stop here.  And if after reading this you feel the need to correct me, suggest that I change my attitude, or comment negatively, please don't do it, just don't.

I have a half written blog post from last year about whether or not it's appropriate for Christians to swear.  My short answer is that words are just words and it really depends on your attitude and your audience.  I don't really swear, but I don't mind if you do.

Ever since Mark died my brain has had a very hard time processing the fact that he's gone and the way he went.  When I revisit the events of that day all I can do is shake my head and say, "Fuck!"  The fact that he's gone is unfathomable.  The only word that adequately expresses my disbelief is fuck.  Sometimes I yell it alone in the car.  Sometimes I repeat it in my head over and over like some kind of mantra.  It's the only word I've found that can clear my head of horrible thoughts.

You might be thinking that I should have some other mantra, a more peaceful, holy mantra. I'm not there yet.  I've tried saying Jesus over and over again.  It's not the same.  Maybe someday.

Today we celebrate that we're ten years out from John's leukemia diagnosis.  This is also the day last year that Mark was diagnosed with depression.  The beginning of the end.  Fuck.

Friends

It's difficult being my friend right now.  I'm abrasive.  I'm prickly.  I'm still hurting in a way that makes other people uncomfortable.  No one wants to hear about Mark anymore, but that's all I think about.  When I talk about my life, what's going on and how I really feel, people around me get quiet and wait for me to finish.  I don't always use pretty language.  They don't comment.  Or else they try to talk me out of my feelings telling me I shouldn't think or say what I'm thinking and saying.  Then they quickly change the subject and steer back to the lighthearted.  I'd love for the conversation to be lighthearted, and I can fake it for a while, but my heart is so heavy I can't keep it up for very long.  It's as though I have an open, gaping wound, but no one sees it.

How can they not see it?

The blessing of being in the pediatric cancer world is that I know several people who have lost children.  A couple weeks ago I ran into a woman whose son died in July.  She invited me out for coffee.  We talked and cried and laughed and cried, the conversation circling effortlessly from our dead kids to the lighthearted and back again.  To her I wasn't difficult, abrasive or prickly.  She listened and nodded in agreement as I strung together expletives.  She didn't try to talk me out of any of my feelings, just agreed that what we were both feeling really stunk and hoped with me that we wouldn't always feel this way.  And while the circumstances of our children's deaths are different, so much else is the same: the wishing for one more minute, one more hug, the worry about our other kids, the feeling of having failed as a parent.  Finally someone willing to listen without judgment or fear or discomfort.  Finally another mom who knows the desperate, impossible longing to go back in time.

We sat together at Starbucks for three hours on a bitterly cold Wednesday, two moms for whom the open wounds we each carry are so obvious as to need no explanation.

How can it be three months?

The grief washes over me.  The guilt pins me down.  I'd stay in bed all day if I could.  I'd drink lots of wine and smoke cigarettes.  And then I'd fall asleep with a lit cigarette in my hand and the house would burn down, and I wouldn't even care.  I'm not saying life without Mark isn't worth living, but I would like to take a break from life for a while.

In those first days I was still me.  I was "forging ahead" and "dealing with my grief" under all my old assumptions.  And Mark was still close at hand.  I could easily see him, feel his hug, hear his laugh.  Now it feels as though I've been set adrift.  The old assumptions don't hold.  I don't know who I am anymore.  And Mark feels very far away.

It's been three months.  How can it be three months?
  
Last week I had to drop my daughter off at the high school.  A group of boys was heading for the parking lot and crossed in front of my car, three boys messing around, moving the way teenage boys move.  It took my breath away.  Yes, I thought, that's the way skinny, awkward, little boy men move.  But I hadn't seen it in three months.  How can it be three months?

I miss my skinny, awkward, little boy man.

Everyone else has gotten back to their regular lives.  It's been three months, after all.

The Wisdom of John

I've been feeling very rational for the last five days.  Five days is a long time to feel rational considering I've felt anything but rational since Mark died.  So today I thought I'd share the wisdom of John, my 12 year old with Down syndrome.

Said to my husband repeatedly: "You're a great dad."

Said to me repeatedly: "You're a great mom."

And said to me out of the blue one day last week: "Mom, you're brave."

These are things he never said before Mark died, and I'm not sure how he knows exactly what we need to hear.  Thanks, John.

I Am a Prickly Pear

Two weeks in a row now I've offended people at church. One poor guy had the bad luck of innocently asking me, "How's it going?" And I think he meant it sincerely, but all I could think was, What do you mean??? How the hell do you think it's going? I answered meanly through tears, "I don't think you really want to know how it's going." Most recently I ran out of the sanctuary sobbing--sobbing--just because someone asked me what was wrong when they saw me crying.

I hate church. I hate church because Mark should be there. On Sunday mornings we'd go to church and all disperse to youth group or Sunday school, then we wouldn't see the kids again until the coffee time in the dining room before the service. Mark would sit at a table with his friends. And then he'd sit with friends in the sanctuary. Now I can't find him. I look around the dining room and he isn't there. I look around the sanctuary trying to do a head count of my kids, but I come up short.

I love church. The people in our church feel like family. They've shown us love and compassion beyond measure. We have five pastors on staff at our church, and four of them were at our house the morning Mark died. Other people from church have reached out in very loving, tangible ways. You couldn't find a better example of a group of people living out the love of Jesus than the people of Elim.

But I'm sure I'll offend someone next Sunday. I can't seem to get through a Sunday without doing so.

I hate church. I love church. I am a prickly pear.

Band concert

There's a high school band concert tonight.  The 10th graders are dedicating their portion of the concert to Mark.

This should have been one of those days when I rush around making sure everything is in order and everyone gets where they need to go--band uniform pieces all present and accounted for, dinner served early, get Mark to the high school early, run to the junior high for a quick meeting, back to the high school for the concert.

I'm not at the high school band concert.  I'm here at home crying, crying as hard as I did the day he died, asking questions with no answers.

Mark was buried in his band uniform pants because they were the only dress pants he had that fit.  I never did hem them.

This is only the beginning.  What am I going to do on the night the class of 2017 graduates?

He's everywhere

The reminders stop me in my tracks:

The dirty sock among the dust bunnies under the couch.

The extra part for the cheese cutter in the junk drawer in an envelope labeled in his handwriting.

The book he lent me to read, the one about prehistoric sharks showing up in modern day, the one I had no intention of reading but will now just because it was a book he enjoyed.

The winter jacket hanging by the front door, the one I can see him in.

The Lego Star Wars Millennium Falcon sitting on top of his dresser, the one he saved up for and bought with his own money and then spent hours building.

A textbook with his name written in the front and the school year "2014-15."

He's everywhere. But he's not here.

Slogging through

Sometimes I’m fine and I can look at everything that’s happened with detached logic.  Sometimes I’m a blubbering mess. 

I miss my boy so much it hurts.  And not just the kid he was, I miss the adult he’ll never be. 

Sometimes I wish it was someone else’s kid.  I’d never wish this pain on anyone, but if I could go back and rearrange things, I’d make it someone else’s kid who did this so I could keep mine and watch from afar.  Yes, I’m that mean. 

In the end it is my kid and I can’t undo it.  So I slog through. 

Sometimes I’m fine.  Sometimes I’m a blubbering mess.

Three weeks

How can it be three weeks?

There are no answers.  He left no note, no explanation why that night was the one.  No idea what pushed him over the edge.  Things had been going well, or so it seemed.  In the end I’m left thinking I failed him as a parent.  He wasn’t comfortable coming to me with whatever it was that was torturing him.  It’s my job to make sure my kids are OK, that they’re safe.  I couldn’t protect him from himself.  I would have handcuffed myself to him if I had known I needed to.  I would have done most anything.  I want to reach back in time to the moment I last saw him alive.  I think about all the things I would have done and said.  And would it have helped?  Or would it just have put off the inevitable?  I’ll never know.  I only know that I feel like a failure.

Grief is a difficult process.  Grief layered with a sense of failure takes my breath away.