Diagnosis

The day that Ollie was diagnosed with what the doctors assumed was pneumonia I completely fell apart.  Until this point I had tried to be stoic and optimistic whenever I was around Ollie.  But, I knew, from my research, that pneumonia was often the cause of death in children with SMA.  We got the messages while Neil and Bekka were at the doctor’s office and that evening came over to the house to go out and get his prescriptions filled for them.  We came home from work before going over there, and I fell apart in Dave’s arms.  I told him what I knew and listened to his optimistic encouragement that Ollie would/could be different.  I tried, SO HARD, to stop crying while we drove the few miles to Ollie’s.  And then I walked into the house and lost it all over again.  I knelt by the couch and played with his hair and rubbed his head and cried and cried and cried.  I was still trying to hide it all but of course Bekka noticed and then she said the most amazing thing:

“It’s okay.  It’s okay.  You can cry all you need to and it will not bother us.  It’s okay.”

We all try so hard to be strong for them and I often wonder if that is, in fact, what they need.  Maybe watching us fall to pieces would give them the trust to fall to pieces with us.

I think about the morning that Ollie passed away ALL THE TIME.  And I think about writing about it, and then it feels too sacred, too personal.  But it is so strange to keep to myself.  Part of me wants others to know and experience that morning JUST so they will know what it is really like.  Or maybe just so that I will not be the only one thinking about it.  I don’t know.

 

Just Some Thoughts

The day before Ollie passed away Bekka and I went shopping for his birthday party.  Everyone had been tentative to plan anything because you just never knew what the next hour would bring.  I had entertained thoughts of planning the party as a surprise so that if anything happened to Ollie beforehand we could cancel it without Neil and Bekka ever knowing.  But.  Bekka decided that he was doing well and we absolutely could NOT let his first birthday pass without a big celebration.  Ollie was going to have a Mickey’s Clubhouse party.  We got streamers and plates and napkins and favors and those things you blow into that make noise and puff out.  We ordered gigantic mylar Mickey and Minnie balloons.

The day after our shopping trip Ollie passed away.

One of the hardest things I did the day we lost him was call the bakery to cancel the Mickey’s Clubhouse birthday cake and birthday balloons.

Dave had the horrible, unfathomable job of calling all the friends whom we had not gotten in touch with yet.  I would not trade jobs with him that day for anything in the world.

I don’t know if I have a point to this little bit.  I just want to keep remembering the days we had with him and what it means to miss him.

Minefield

If there is one place in the whole word where you would expect to be safe from the slap-in-the-face reminder of loss it would be a comedy movie about zombies.  Comedy.  Zombies.  Woody Harrelson.  Really.

Dave and I went to see Zombieland with Neil and Bekka last week and out of nowhere the hilarity ceases and we find that a main character has lost his son.  And we hear the line: “take away a man’s son and he has nothing left to lose.”

The whole world is a weird, surprising minefield for anyone experiencing loss.  Madeline Sphor’s grandfather mentioned it too in his guest post on Heather’s website.  You just have no way of knowing where it will hit next.

We were helping Bekka shop for Neil’s birthday.  Several large boxes needed to be put in the trunk of the car.  We open it up and there is Ollie’s stroller.

I ordered the complete season of This American Life and watched a few episodes while Dave was out of town.  The emmy-winning episode of the show is about a 27-year-old man with SMA.

There are places where you know the mines are.  Every time I turn on my computer at work I know I will see a photo of myself and Ollie.  If I get online I know I will read updates from other SMA families.  If I call my parents I will be asked how Neil and Bekka are, instead of how Ollie is.  The knowable mines are easy to handle.  It the ones you don’t know about that knock the wind out of you, really quite literally.  You feel your stomach clench up and your head starts to swim.  Your ears roar with the enormous vacuum of silence.  Sometimes the mine goes off completely.  Sometimes it’s a dud.  You just never know.

Ollie Slideshow

http://picasaweb.google.com/sooner97/OllieSSlideshow#5368069772005659074

Ollie Bear

Dear Ollie Bear,

Today is Monday, which means another week has gone by. We miss you so much now, so much more than before. Tonight I started to think how life was maybe starting to be a little more normal… and then I collapsed in on myself, because there is no normal.

Normal would mean having you here with us to hold and watch football with and sing to and read to. Your not being here is the complete opposite of normal. It simply isn’t POSSIBLE for there to be a world without our Ollie. But every day we wake up the impossible is still here. A world without your smiles and giggles and awesome hair… it’s not the world I know.

I was thinking about our last Sunday together. It so happened that I was able to sit beside you on the couch for a couple of hours while we watched Lost with Momma and Daddy. I still feel guilty about that. I wish it had been one of them. But I did my best Ollie. I rubbed your back for probably two hours straight. Often my arm started to hurt and I thought about stopping, but how could I stop? It was all for you. I’m so glad, eternally, forever, immensely glad that I never stopped rubbing your back. I miss you so much little buddy.

We all miss you so much.

Location, Location, Location, part I

Alexa recently asked her readers where we live. Is it home? Is it a house? City/Suburb? In her follow-up post she wrote about the places she has lived in the past and asked again for reader input.

Well.

Until I was around 8 years old I grew up, literally, in a trailer park. I realized this is not common knowledge when, relating a childhood story to Neil and Bekka the other day, Neil commented that the only thing that could make the story better was if we lived in a trailer. We did! We did live in a trailer! I remember a few things from that period… my friend Loretta a few trailers down, trying to dig a hole to hell in the side yard, looking for the end of the rainbow, the barber-pole-striped swingset.

When my parents bought land in the country (it was country, then) the plot was surrounded by woods (there were woods, at that time). We moved the trailer out to the land until my parents could afford to build a house on the same property. The folks hired to transport our HOME dropped it into the ditch in the front yard. It is disconcerting, as a child, to see your house tipped over on its SIDE in what should be the front yard. My father had to call friends and relatives to come dig our trailer out of the ditch. I think my mom is still traumatized by that day.

The house went up behind the trailer when I was 9 or 10. It was THRILLING to come home from school every day and see the house being built right before my very eyes. We played all over the construction site. It was fabulous.

I loved growing up where I did. The house was surrounded by woods on all sides and the lots across the street were lake-side lots, so if we made friends with the neighbors we could go swimming and fishing. The woods we explored like little lost children. We mapped them out: Tree City, Moss Land, That Place where the Liquor Bottles and Target Practice Show Up. I had a favorite dogwood tree that I could climb up into and be hidden. When the wind blew it was like sitting in a rocking chair. I wrote a lot of poetry and read a lot of Judy Blume in that tree.

I remember one day I found a nest of turtle eggs after a good rain storm. The next day I dragged my little sister out to see them. No turtle eggs. Years later I wrote this haiku about the incident:

Come see! Turtle Eggs!

Watch our for that fat black snake.

Oh. Damn. Let’s go home.

The house sat on a hill and we carved a marvelously bumpy bike trail that swooped down the big hill, into a gully at the base, and POPPED you back up on the other side, where the street was. Later I would practice not tipping over on the riding lawnmower while I mowed the same gully.

There was a dry creek bed in the woods and in places the bank could be rather tall, steep, and muddy. We attached a rope to the base of a tree overlooking the bank and practiced our “mountain climbing” by using the rope to scale the muddy bank.

When I was 12 or so I planted a plum tree sapling and a rose bush cutting in our front yard. Last year my mom delivered bushels and bushels of fresh plums to her friends. The rose petals we used in my wedding.  All in all, I would wish no less for my own kids.

See-Saw

Upppp… down.  Uppppp… down.

Life has been, strange, for lack of a better word, since we lost Ollie.  A couple of weekends ago Dave and I went to South Carolina to visit my brother, his wife, and my two little nieces.  Driving down I was in a complete panic to get to S.C. before the girls went to bed.  I couldn’t explain very well why I was so panicked about it, but it went something like this…

We had put off visiting my family for a while because we didn’t want to be that far away (only 2.5 hours) in case anything happened with Ollie while we were gone.  I was thrilled to be able to go and see my nieces, whom I had been missing for months and months.  But.  Being ABLE to go and visit them meant that Ollie was gone.  That I could go see them was possible because we had lost him.  Ollie was also, in many ways, my “nephew.”  We are not related by blood, but Neil and Bekka are our family by choice.  Bekka is our sister.  Neil is our brother.  Ollie was our family.  Part of me was in such a hurry to see my nieces to assure myself that they were ok.  That part of my little family was whole and well and happy.

I cried, slowly and steadily, while we drove.  And when I called my brother to let him know how far away we were, I cried all the harder when I heard the girls would be in bed when we arrived.  It took me a while to fill Dave in… that I wasn’t crying about being late, but about Ollie.

We had a great visit with my neices, aged 5 and 16 months.  Marianna started kindergarten this year and Abbigail is learning her first words.  Waking up in the morning and being told that she couldn’t have something little Abbigail responded with “awwwwwww man.”  I did a double take.

*****

Ollie’s place on the couch is so empty it hurts.  I walk into the house and expect to be able to lean down and kiss his (SWEATY) head.  For the past six months or so Ollie really had to be prone 24/7.  Occasionally Neil and Bekka put him into his special chair to take pictures on his monthly birthday, but it was only a matter of minutes before we had to lay him down again.  He just couldn’t get enough air.  As a result, he was permanently in “his” place on the couch.  I have to stop myself from leaning over to smell the cushion to see if it still smells like him.

******

This weekend I went over to mow the lawn for Neil and Bekka and I had to stop and look at all the pictures in the house.  It seemed ENTIRELY unreal that he was not there.  He’s Ollie.  He was our brave, good Ollie.  He couldn’t be gone.  I was mowing the back lawn and remembering the little photoshoot we had outside before he had his gtube surgery.  I still believe, and will always believe, that photographing Ollie was the most important work I will ever do.  Of course, he made it easy.

The moments of grief I have I know are nothing in comparison to what Neil and Bekka are experiencing.  They will NEVER not miss him.  They will never be able to go an entire day and not think about him, about his life, about his absence.  But they are in many ways as brave as Ollie always was.  They are able to laugh.  They are able to watch other people with their babies and smile, instead of being engulfed in rage or despair.  They are able to think about tomorrow, instead of just two seconds from now.  They are amazing.  We are lucky to know them and be there with them and for them.

******

Dave and I have not taken off our bracelets for curesma since the day of Ollie’s death.  We may not ever take them off.  If anyone asks we can tell them about Ollie and about Spinal Muscular Atrophy and about how close they are to a cure.

******

P.S. A HUGELY special thank you to Alexa at flotsamblog.com for her post about Ollie on his birthday.  It meant SO much to Neil and Bekka and to all of us.  If you haven’t read it, go there now.

Married

1. Marriage is awesome.  There is nothing in the world like knowing someone is there for you no matter what, loves you no matter what, and with whom you make a most amazing, fantastic team.

That said, having grown up as a girl in the evangelical South, there are a few notions out there I think I should help the single person out with.

1. Being married does NOT make you happy all the time.  It does not cure whatever issues you have with your self-perception or identity or family.  It might help, but you WILL still be sad sometimes.  You will still get angry at traffic and come home in a bad, angry mood.  You will still sometimes feel left out of a conversation.  Having a spouse does not cure ANY problem you already have.  Expecting it to will only cause irrational disappointment in the significant other for not living up to some unspoken, imaginary standard.

2. There will still be things you don’t understand about your spouse or he/she does not understand about you.  Sometimes that is exciting.  Sometimes it is annoying.  Read that again.  Read this: sometimes, sometimes within the first moth!, you will be annoyed by your spouse.  The reality is simply that its not always giggles and rainbows.  There will be moments of disappointment along with all the moments of glee.

3. You do not actually get to spend the first year of married life isolated in a rapturous glow of love, sex, flowers, and kittens.  You will be called upon (often! in some cases) to visit your inlaws before you really want to.  You will continue to go to work 8 hours a day, 5 days a week.  One of you might be committed to your church or volunteer group on a weekly basis.  The first year is not, in fact, all about spending time alone with the spouse.  It is about being MARRIED.  Working out finances, schedules, holiday plans all are part of the process of becoming a team.  Not always Romantic with a capital R, but still wonderful in its way.

Some of the happy surprises of being married include:

1. It gets BETTER.  The joy you feel on your wedding day only gets better and deeper as you learn more about your spouse and grow together.  You don’t think it can get better, but every day it does and every day you get to love him or her in a slightly new, unexpected way.

2. You don’t have to do it alone.  Dave and I are unusual maybe in having such a hard, impossible, unfair thing – the death of Ollie – occur within just a few months of marriage.  And I don’t think that either one of us could have made it through this without the other.  We have held onto each other as we grieve and as we strive to be there for Neil and Bekka and have been able to comfort one another on a daily basis.  I know I would be lost without this.  Without him.

3. There is nothing in the world liking being lucky enough to wake up every day next to the person who loves you more than anything…  who thinks you are perfect and lovely and good and just the perfect fit.  It means everything.  It makes everything possible.

The Breaths We Take

Ollie is gone.  He passed away this morning, around 5.30.

Bekka and Neil have a photo of Ollie in a frame on the kitchen windowsill. The frame says “Life is not measured by the breaths we take, but by the moments that take our breath away.”

For whatever reason, as I was looking at it today, it occurred to me in such a new light. For most us, our actual physical breath is rarely taken. Sometimes we might fall and have the breath knocked out of us. Or have a sudden scare and “skip” a breath. The phrase is meant, obviously, as a metaphor.

But today I read it literally. The moments that take our breath away. Ollie, dear, brave, happy, loving Ollie was constantly having his breath taken away. Forcefully. By a disease called Spinal Muscular Atrophy. This disease does not ask. It takes, and takes, and takes. And every day we watched Ollie fight to get his breaths back. He little tummy would squeeze and squeeze and squeeze as his diaphragm fought to simply INHALE. To get his breath.

So if I reread that phrase… it tells me that Ollie’s too short life was actually the fullest. Never in our lives will we know the struggle that Ollie faced every second, to inhale and exhale. He, more than any of us, knew what it meant to have his breath taken away. He showed us what it means to live, and he is in so many ways, my hero.

Briefly

I am getting married in (less than) ELEVEN days.  This is mind boggling to me.  And also perfect.  There are so many ways in which Dave and I are perfectly suited to one another, and I cannot wait to come home to him every day.

One thing I have always enjoyed asking my married friends is this:  What is the one thing about marriage that most surprised you?  So, if anyone out there is still reading this and is also married.  What is the one thing about marriage that most surprised you?