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.

http://www.gladyshardy.com/

So, so, so tired.  I need to go to bed five hours ago.

This has been the terrible, horrible, no good, very bad week so far, but in the midst of all of it, my fiance has been AMAZING.  He has made dinner, gotten groceries and kitty litter, given plenty of hugs and backrubs, MADE BROWNIES for my grad class, listened to me, and given wise counsel.

Which is all to say: I got the very best fiance in all the world.  I am a lucky lady.

1. Do I really have to write it down?  Let’s just say: January 20, 2009.  Out with the old; in with the new.  GLORY GLORY HALLELUJAH!

2. MAY 16th. MY WEDDING DATE.

3. When I get into the bathtub my kitties go and curl up on the bed, where they wait for me to get out so we can all snuggle together.

4. The song I will dance to at my wedding for my first dance with my husband.

5. I am quite excellent at playing the bass in Rock Band.  I may never learn to drum, but I can strum.

6. We got somewhere between 4 and 6 inches of snow on Tuesday!!!  This worked out perfectly and allowed me to stay home in order to watch the inauguration.  WOOOO HOOO.

7. Lavender.   I love lavender.  I love lavender detergent, lavender candles, lavender body wash.  Even actual lavender, the plant!

8. School.  I love being in school so much, I cannot imagine ever not being in a class.  My favorite part may be starting the semester with a brand new pearly white notebook.  This semester I am taking Third World Feminism and it is going to be wonderful.  I love it, and the professor, already.

9. Wine.  I may have mentioned this before?

10. Comfy sheets!  Nothing is better than comfy, extra soft, 800 thread count sheets!

What can I say?  I am overjoyed.  Yesterday was the most important day of my life.  Barack Obama will not be perfect.  He won’t save us all.  The world is not suddenly puppies and rainbows today.  But he will think.  He will listen.  He will examine all the sides of an issue before he marches into a predetermined decision.  He will include all the voices of our nation, and not just the one or two he agrees with.  It is no accident that he spoke to Muslims and nonbelievers, as well as Christians and Jews in his speech.  We are so blessed to live here and so blessed to have such a moral, compassionate, intelligent new leader.  Hail to the chief, indeed.

In the blue box to the left I have uploaded a story from The Moth. Listen to it. It will break your heart and make you more compassionate and hopeful all at the same time. You are welcome. And thanks to Jennifer Hixson for telling the story.

I haven’t posted in a long while, I know.  That may have had something to do with finding out that my parents read my blog.  Just.  Maybe.

Also things have been busy and rather hellish for lots of people that I care about.  Dave and I are both ready for this year to be OVER and a new, better year to be on the way.  That would be nice.  Because these last few months have just been very mean to too many people.

I am going to break a major rule of blogging here and tell you about my dream last night.  Warning: THIS IS NOT A NICE DREAM.

I was in a large field, plains area staying at a house there.  Over to the right of our house was a shed-like cabin that was completely closed up.  Everything was gray and green, the grass and the cabin, and all the windows and doors were covered in black paper.  I was very, very nervous around the cabin, but also curious and kept noticing odd happenings – mostly just flutters and odd noises.

I finally decided to break into the cabin and when I did I found a serial killer.  A serial killer of children.  There were bones and instruments locked into cabinets.  The man came at me and tried to eat me.  I shoved my fist into his mouth and began pushing it down its throat, and then I ripped his jaw from his head, killing him.

Is that a terrible thing to write?  I have had dreams this vivid, and often this violent, for over a year now.  They are not all terrible though.  Some are enormously entertaining.  Dave says they are better than TV!  For a certain period they were only nightmares.  Really, really bad nightmares and I would try to drug myself before bed so that I wouldn’t have them.  Sleeping aids, wine, nyquil were occasionally used in my efforts to stave off dreams of rape and murder.. even dreams in which I WAS the demon, the murderer.  Sometimes it worked, sometimes it didn’t.

I don’t know if I have a point to any of this, but maybe it is this…  since ending therapy, I no longer have NIGHTMARES of terrible, horrifying events.  I still have bad dreams, but I don’t have anything like what used to be.  And apparently now my dreams are showing me that I am taking back power in my life.  Killing the killers may not be the most Care Bears kind of dream to have, but it means something, still.  I think it means I am doing well.  I am learning still more about myself and what it means to be me.

You can listen to this song by clicking the blue box on your left.  You can listen to MORE of her music by clicking on her name here in this post, which will take you to her website.

Mercy Now
Mary Gauthier

My father could use a little mercy now
The fruits of his labor
Fall and rot slowly on the ground
His work is almost over
It won’t be long and he won’t be around
I love my father, and he could use some mercy now

My brother could use a little mercy now
He’s a stranger to freedom
He’s shackled to his fears and doubts
The pain that he lives in is
Almost more than living will allow
I love my bother, and he could use some mercy now

My Church and my Country could use a little mercy now
As they sink into a poisoned pit
That’s going to take forever to climb out
They carry the weight of the faithful
Who follow ‘em down
I love my Church and Country and they could use some mercy now

Every living thing could use a little mercy now
Only the hand of grace can end the race
Towards another mushroom cloud
People in power, well
They’ll do anything to keep their crown
I love life, and life itself could use some mercy now

Yea, we all could use a little mercy now
I know we don’t deserve it
But we need it anyhow
We hang in the balance
Dangle ‘tween hell and hallowed ground
Every single one of us could use some mercy now
Every single one of us could use some mercy now
Every single one of us could use some mercy now

And she is right.

Dave and I have had an extremely difficult two weeks.  We are both fine individually and together.  The difficulties are someone else’s story, but we are hoping to, trying to share the grief of others whose situation is unfathomable, unfair, and possibly the worst thing a human being can be made to experience.  In addition, Dave has suffered his own kind of loss which you can read about at www.likelystories.com.

It’s been a tough time.

If I did not know Dave I would not know about this situation and I would be unphased by what is going on in their world.  But I did meet Dave.  I met him and fell in love with him and with so many of the people whom he loves.  I have entered their community to share both the joy and the loss.  And I would not trade for anything in the world the ability I have to be with Dave during this time and to try to share this experience with him, in whatever way that happens.  It hurts like hell.  But I think this is what life is supposed to be about and what it means to be human.  I think this is what LOVE is about.

Barring a miracle, this current situation will be something that remains with us for the rest of our lives.  We would appreciate whatever thoughts and prayers you have handy not so much on our behalf, but on behalf of our friends.

For tonight I am making a fire in the fireplace.  Reading a book about the human condition as experienced by others.  Having a glass of wine.  Aching and hurting all over my body and my heart.  Hoping for that miracle.  Watching the cats stare into the fireplace until they fall asleep.

Time it was I had a dream
And you’re the dream come true
And if I had the world to give
I’d give it all to you.
I’ll take you to the mountains
I will take you to the sea
I’ll show you how this life became
A miracle to me.

You’ll fly away
but take my hand until that day
So when they ask how far love goes
When my job’s done, you’ll be the one who knows.

All the things you treasure most
Will be the hardest won
I will watch you struggle on
Before the answers come.
But I won’t make it harder
I’ll be there to cheer you on
I’ll shine the light that guides you down
The road you’re walking on

You’ll fly away
but take my hand until that day
So when they ask how far love goes
When my job’s done, you’ll be the one who knows.

Before the mountains call to you
Before you leave this home
I will teach your heart to trust
As I will teach my own
But sometimes I will ask the moon
Where it shined upon you last
And shake my head and laugh and say
It all went by so fast

You’ll fly away
but take my hand until that day
So when they ask how far love goes
When my job’s done, you’ll be the one who knows.

- Dar Williams