Wednesday, September 16, 2015

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!"


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.

Tuesday, August 25, 2015

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.

Friday, July 31, 2015

Don't Confuse Dumb Luck with Skill

I spend a fair amount of time on facebook. OK, I spend way too much time on facebook. It's a nice distraction, and for now distraction is my friend. If you're a parent and have friends who are parents, you may have noticed the many links posted by your friends on facebook to articles and blog posts about parenting. Links to lists of things to do with and for your kids. Links to articles about ways to boost your child's self-esteem, or methods of positive discipline. There was even an article discussing the reasons why kids these days self-report depression more so than previous generations, with broad leaps to conclusions without proper consideration of all the variables, much of the blame being placed squarely on the shoulders of their parents.

I used to read these articles and blog posts and take it all to heart. I'd read the recommendations and evaluate my parenting, making mental notes about the things I needed to change. I'd pat myself on the back, taking full credit for my kids' successes. And worst of all, I'd look around at what I thought other parents were doing wrong and pass judgment on them. Self-righteous and judgmental.

Then an ugly disease called depression landed on my doorstep. Suddenly all the parenting advice in the world wasn't enough to combat a force beyond my control. For those of you who think what my son did was somehow due to my parenting, think again. For those of you who think you can ward off a chemical imbalance in the brain with positive discipline techniques, you can't. And for anyone who's been wondering what I did wrong and why my kid did what he did and yours didn't, stop.

I'm a stay-at-home mom. Nineteen years ago I was working as a CPA at a public accounting firm about to head out to a client's office when my water broke in the reception area of my office. That was my last day of full-time work outside the home. Staying home with my kids was important to me, so I put my professional life on hold to tend to my little people. Over the years I've read countless children's books, mated innumerable socks, applied band-aids, guided, comforted, listened, just like any other parent.

My husband read an article about the importance of family meal time and made it a priority to be home for dinner every night. And I made the dinner, from scratch, trying to keep it healthy, always including fresh vegetables and fruit. As my big kids got older, the conversation moved from just checking in, highs and lows, to lively discussions about current events, politics, movies, or the probability of a massive earthquake taking out all of California. (Some of my happiest family times include sitting at the table chatting with my older kids long after the little ones had finished eating and wandered away. What I wouldn't give to relive one of those nights with Mark!)

A friend of my oldest was over one summer day when they were about seven. When my daughter asked if they could watch TV, the friend said she wasn't allowed to watch TV in the summertime. This gave me an idea. Much to the dismay of my children, I implemented a TV-free summer policy. If you think this was easy, it was not.

All this to say, I took my role as a parent very seriously, which is why depression came as such a shock to me. I couldn't protect my son from the thoughts that plagued him. He was a happy, resilient kid, and then he wasn't. No amount of denying TV in favor of creative play, or engaging him at the dinner table, or implementing any of 100 different parenting techniques could overcome the chemical forces at work in his brain.

My experience as a parent, my skill, couldn't keep mental illness at bay.

Don't have a child with cancer? Dumb luck.
Don't have a child with autism? Dumb luck.
Don't have a child with food allergies? Dumb luck.
Don't have a child with a chronic disease? Dumb luck.
Don't have a child who suffers from depression? Dumb luck.
Don't have a child with Down syndrome? Your loss. (Seriously, I'm the lucky one here.  Just ask anyone with a child with Down syndrome.)

The best parenting won't prevent cancer. It won't prevent autism. It won't prevent allergies, or chronic disease. Or depression. So don't confuse dumb luck with skill. If your life is easy and your children healthy and happy, breathe a sigh of relief and know that you're very, very lucky.

As for me, it's summertime and the TV is on. My kids had chocolate chip cookies for lunch. I've quit reading parenting advice. And I won't be giving parenting advice either.

Oh wait, just one thing: please do your kids a favor and teach them to chew with their mouths closed. That's all, just teach your kids to chew with their mouths closed.

Saturday, June 27, 2015

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.

Saturday, June 20, 2015

On Faith

I've heard of people abandoning their faith in God after bad things happened to them.  I've always wondered about that. Why is your faith adequate when bad things happen to other people, and then suddenly invalid when bad things happen to you?  If you could remain faithful after learning about the Holocaust, for goodness' sake, then why abandon it when suffering touches you personally?

And yet.

Losing Mark has knocked me loose.  I've had to step back and reconsider everything I believe.  Everything.  I've had to pull it apart piece by piece to see if it's still valid.

Is there a God?  I admit that at first I wanted to abandon my belief that God even existed. After all, he allowed Mark to die, didn't he?  But it's hard to look around at creation and not believe in God.  I recently heard the world referred to as "an amazing accident."  I can't believe this was all an accident. When I'm confronted by the complexity of it all, the amazing intertwining, it seems obvious it was all carefully planned.

So, if there is a God, is he the God revealed in the bible?  In January I joined a women's bible study in the middle of studying the life of Moses and jumped right in at the book of Leviticus. Ouch.  It was not an easy study.  The God of the old testament feels very judgmental, a God who sees things in black and white and delivers swift punishment, a God who commands the obliteration of whole communities.  I haven't studied the old testament much in the past and I came away feeling rebellious, questioning passages and struggling to understand.  In the new testament (Matthew 22) Jesus says I am to love God with all my heart, soul and mind, and he says I'm supposed to love my neighbor as myself.  Verse 40 says: "All the Law and Prophets hang on these two commandments."  In other words, without love the whole old testament, every rule it puts in place and every decree delivered by Moses and the prophets, falls apart.  It's as though Jesus is reminding me that I only need to worry about loving God and people, and the rest will fall into place.  I can better understand the old testament when see through Jesus' words.

So, God exists, and he's the God of the bible.  Then why, oh why, does he allow suffering? And not just my suffering, but horrible, unspeakable suffering?  In 2 Corinthians 4:17 Paul says, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."  How can he describe what we experience on earth as "light and momentary"?


Could it be that our time on earth is insignificant when compared to what waits for us in heaven?  It's hard to imagine our whole lives being insignificant when compared to eternity. It's really hard to imagine eternity.  We're stuck here on earth  We're stuck in time.  We're stuck inside our own little brains.  We're stuck not understanding, and we're asked to trust, to trust in a God great enough to create everything--everything--we see, know and love.  In the same way a parent asks a child to trust and believe, we're asked to trust and believe in God's goodness.  I've spent my time since Mark died alternately kicking God in the shins in anger and grabbing onto his knees looking for comfort.

If God is all powerful, then he allowed Mark to die.  He allowed Mark to take his own life. People tell me it will all make sense when we get to heaven, but I think when I get to heaven it won't even matter.  I think when I get to heaven and see all its glory and understand eternity, whatever happened here on earth will be so insignificant that no explanation will be necessary.  So I rest in the knowledge that God's in control, that he allowed Mark to leave earth and join him in heaven, and that I'll see Mark again.  Sometimes for very brief moments, it's as if a curtain opens and I'm able to see eternity stretch out before me, and God's perfect peace washes over me.

Just because I get glimpses of eternity doesn't mean I have this all figured out.  Grief is a tricky thing.  No matter what I believe, Mark is still dead and I miss his physical presence. But I choose to believe in God.  Every day I choose God, even on the days I want to kick him in the shins.

Monday, March 2, 2015


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.

Monday, February 2, 2015

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.

Wednesday, January 21, 2015

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.