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.

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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.

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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.