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.

Carpe Diem: Seize the Carp

I need a lot of downtime, whole days with nothing on the schedule.

I'm not the mother with a successful photography business raising five kids, two with special needs. I'm not the mom selling real estate while juggling the schedules of three boys in various sports. I'm not the mom who after hearing that her daughter had a lifelong intractable seizure disorder reacted by painting her home's interior. These are all women I know--real people!--but that's not how I operate.

It takes me a long time to react to new situations, to figure out where I'm going and what I'm doing. It took me three years to get used to the idea that I needed to register for summer sports in February. Who thinks about summer when you're just trying to stay warm in February? I was always the mom running to someone's house with a registration form and check in March.

I can handle only one event at a time. All my attention focuses on the band concert dress that needs to be hemmed before the band concert on Tuesday completely forgetting that another child needs an outfit for a choir concert on Thursday.

Have you ever seen the videos of people in boats traveling down a river while Jumping Asian Carp fly out of the water and whack them? That's me. That's how life feels. Make dinner, hem the dress, find the shoes, go to church, go to speech therapy, read the book, answer the e-mail, go to the play. Life keeps coming at me like those Asian Carp. I duck my head and bat them away one by one, but I need to stop often and crawl into the bottom of the boat to rest.

I don't have a type A personality. I don't even have a type B personality. I'm way down the alphabet at C, D or E.

None of this was helped by Mark dying. Now I see the carp coming, duck down and just hope no one notices I'm not even batting them away anymore. I celebrate the fact that I've managed to keep everyone in clean underwear for the last year. Seriously. Everything beyond that is gravy.

And what made me think about this today? John has needed to have his nails clipped for about a week. I beat myself up this morning as he was getting on the bus and I realized I had forgotten . . . again. Off he went to school with claws on his hands. But wait! I thought. His iPad is charged!

His teacher won't appreciate it, but today that was the carp I was able to knock down. I'm hunkered down in the bottom of the boat. All other carp are being ignored. 

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.