Tuesday, July 22, 2014

The Summer When Energy Found Me

This summer, even amidst the grieving, something wonderful has happened in our family: my energy has begun to return. I still don't feel great, but I can say confidently now that I feel much better, better than I have in about three years.

This seems to coincide exactly with what the neuromuscular doctor told me to expect with the CoenzymeQ10 supplement: to notice improvement in about two months, with full benefits felt around six months. I've been taking CoQ10 for about three months. After six weeks I noticed the brain fog beginning to lift. My thinking felt clearer, less like I was moving in slow-motion and more like I was witty and ambitious again.

Within another two weeks I began to have short periods of time where I actually felt energetic, like I could wash the dishes and put in a load of laundry without needing a nap and a cup of coffee in between. It would only last an hour or two at first, but the energetic periods slowly became longer and more frequent.

Then I noticed that my legs actually began to feel like a weights had been taken off of them. Have you ever done the little slumber-party game where you stand in a doorway and press the backs of your arms out as hard as you can against the doorway for one minute, then when you step out of the doorway your arms begin to float upward? That's how my legs felt, like I was walking with so little effort now that they almost lifted too high, like the slightest amount of force made them just float upward now. I wondered if I might be able to lay on my back and raise a straight leg upward now, something I had been totally unable to do in December, and to my amazement my leg flew up with hardly any effort at all. I've been galloping through the grocery store lately (OK, not actually galloping, but it feels like it compared to the way I used to drag myself through stores last winter), and running up staircases for the fun of it.

About three weeks ago I noticed another completely foreign feeling: waking up feeling refreshed, like I'd actually had enough sleep, like I wanted to get out of my bed and do things: clean the house, take the kids to the swimming pool, or teach Toby to ride his bike. In fact, I've felt energetic and ambitious long before having that cup of coffee I used to cling to. And, at least in that way, it's been the best summer in a long time.

I got a pool pass for our family this summer, and we've gone now more times than I can count. Hannah apparently can hardly recognize me as her mother. When I told the kids we were going swimming for the second day in a row a few weeks back she gasped with wildly excited eyes, "Swimming again?! You've got to be kidding me!"

This summer:
-Hannah and Emma learned how to swim
-Naomi has grown to be quite a strong swimmer
-Toby learned to ride a bike
-Elijah has learned to play in the backyard and obey the boundaries I've set up for him
-The girls learned to make rubber band bracelets and set up a busy shop in our backyard where they sell  all sorts of rubber band accessories to the neighborhood kids.
-All the kids have made friendships with neighbors
-I took the four older kids bike riding on a nature trail while I attempted to keep up with Elijah in a stroller
-We took a week's vacation to visit my family
-We went to the county fair
-All four kids are on separate soccer teams, which means we have practices and games almost every day of the week.

And I'm actually enjoying it all. It's been really amazing to feel alive again. I remember how much of a struggle it was just to get up and get the kids out the door last year at this time, and how much I loathed any extra activities for that reason. I remember the dismay of knowing that no matter how many hours of sleep I got I would never, ever feel better. I remember the fear that something was seriously wrong with me when my arms and neck began to actually give out on me. And I am so grateful to be on the other side of those feelings.

I still get tired, but it's a much more normal tired, the kind that comes after a long day of activity and disappears after a good night's sleep like it's supposed to. I still struggle with weakness in my arms and neck, but even that is finally improving. Yesterday and today I have begun driving short distances without the help of my neck pillow--yes, holding my own head up against the movements of the van--and I'm able to do it for about five to ten minutes now, which is a great improvement.

All of this adds to the collision of emotions I've had in the last month: so much grief over the new BBS diagnosis, but so much happiness over the return of a good deal of energy and ambition. I've feel like this summer I want to give my kids the best summer they've had yet, to make sure that it is full of happy memories, and I feel that I'm achieving that goal and enjoying doing it, even with all the grief mixed in alongside.

Emma's endocrinologist called me today to tell me that Emma's enlarged thyroid is due to autoimmune thyroid disease, the same as Naomi has, but that her thyroid function actually looked a little better on this last test so she won't be put on medication right now--we'll just have to watch it closely. She also told me that Emma's hormone tests show that Emma's adrenal glands are definitely acting as if they are in puberty and Emma's pituitary is showing borderline high hormones as well--not scary-high levels or treat-it-right-now levels, but "we need to watch this closely" levels. Emma will be having a brain MRI in October to see if there's anything abnormal, such as a cyst in her pituitary gland.

On August 4th I will be taking Naomi and Emma to see a pediatric ophthalmologist to begin the process of assessing the condition of the girls' retinas and watching their degeneration, an appointment I am simultaneously anxious for and dreading.

But today, today they are well. Today they are "healthy." Today is what we have. So you know what I did today? I took the kids to the pool and we had a glorious time. Naomi passed the pool's swim test and got up her courage to jump off the diving board, then decided it was so much fun she jumped off ten more times while we laughed and cheered her on. This is an amazing accomplishment for a girl who three years ago couldn't stand the feeling of any water on her face.

Tonight we went to soccer practice and had a lovely time there as well watching Toby ham it up in front of all his new friends. I'm so glad that I am now able to give this kind of day to my kids, and I'm hoping to do it again tomorrow.

Monday, July 14, 2014


I watched you tonight
In the golden evening
Surrounded by girls
Leaner, stronger, faster
And I saw in you strength
Those girls will never have

I watched them flit with ease
But you concentrated
With you whole being
They glided
You fought
They never tired
You tired
And ran on

Girl after girl showcased
The reflexes of a gazelle
You took a ball to the face
And chose to stay
In the line of fire
Even when reflexes failed you

They danced on ankles
That have never turned
Your ankle betrayed you
For the thousandth time
In your short life
Leaving you behind
Yet again

When I saw the tears well up
When I went to meet you
You sighed
Wiped your eyes
Stood up
And began your plans
To practice harder at home
That's when I knew
You were stronger
Than all of them

I watched you tonight
In the golden evening
And my greatest sorrow
Was knowing the others
Didn't see it

I wish that I could gather them up
Players, coaches, parents, fans
Wish I could explain
Everything you had overcome
To be where you are
Wish I could give them eyes to see
Your bravery

But I stood silently
And marveled
And thanked your maker
That out of those twelve girls
You were mine

Thursday, July 10, 2014

The Ache

I wanted to come out fighting when we were told our girls had Bardet-Biedl Syndrome. I wanted to be the mom who makes the best of a bad situation.

I took notes like a madwoman at the BBS conference. I didn't miss a session, or a word. I came home on a mission. I e-mailed doctors and more doctors. I checked into insurance coverage for specialists. I marched myself into the special education headquarters and talked with their director to find out how to get the girls the best educational opportunities. I wanted to fight. I wanted to be thankful for what we have and hopeful for the future. I didn't want to ache.

But somehow the ache has found me.

And I've realized that it's better to meet the ache, to give it a long look and a deep sigh, to unchain it and acknowledge that it lives here now--not just an occasional visitor, or even a frequent guest; this ache is a part of my story now, a part of me.

The ache finds me as I watch my kids play in the backyard: Hannah and the rest of the neighborhood running circles around Emma, who waits patiently to join in the game.

It finds me when the nurse asks Emma how she's doing today and Emma stares back blankly, not sure what the nurse is asking; and when that nurse interprets her blank stare as mental disability, gives up talking to Emma, and talks to me instead.

The ache wells up when Emma runs into a pole on her left side at church, her sister on her right side that evening, and falls flat on her face tripping over a curb five minutes later. She cries that she didn't see the curb as I wipe her knees. And now I know. I know that she didn't see it. And it breaks my heart.

I am heartbroken.

The ache finds me when she gets up, dusts herself off, and smiles again. It wells up when she giggles.

I ache when she comes grinning with her hands hidden, "Mommy, geh wuh I ha behine my back! (Mommy, guess what I have behind my back!)" and reveals three droopy dandelions with all the pride her heart could muster. I kiss her forehead, find the perfect vase, send her back outside, and I ache.

I don't ache from despair or because there's no hope; I don't ache because there's no beauty left in life. I ache because there is so much beauty and so much sadness all woven together in our life now. And as far as I can tell language fails for that emotion.

Watching Emma makes me ache like a sunset, full of mournfulness and grandeur all intertwined; like a wolf's howl on a still night, so haunting and yet breathtaking that you don't cry or smile, you just stand, and stare… and ache.

If you see me fall silent at one of Emma's soccer games this summer, staring quietly at her while she swipes for the ball. Please don't tell me that everything will be OK, because you and I both know that in a way it will and in a way it won't. Just stand beside me, and if you want you could whisper, "It's like watching the sunset, isn't it?"

Thursday, July 3, 2014

To Whisper to the Dark

I came tonight
To where the crescent moon glows
In deepest blue
Over brightest copper
Behind the dark outlines
Of age-old pines

I came because here
Nothing has changed
When everything has

I came to watch tiny lights bob carelessly
Over the rising grasses
And listen to the lonely train whistles
Miles away
And to breathe again

I was a little sick to my stomach
As we drove to that quiet room
Knowing it was coming
Yet shell-shocked when we left
Despite all efforts to be prepared

I was too busy to feel much
Too much to learn
Too many people to meet
Sandwiches to pack
Hours to drive
Holding my breath
Until now

I came tonight
To where the crescent moon glows
In deepest blue
Over brightest copper
To breathe again

Today I fought for them
I scanned reports
I e-mailed specialists
I knocked on offices
Today I put my hands to boulders
And my axe to trees
To clear a way for them
But tonight I came to breathe

To let out the ache
That begs for air
To lift my eyes
To the depths of the universe
And whisper that this hurts

I've come to sort emotions
Tangled beyond recognition
The grief from hope
The relief from sorrow
The immeasurable pride
At the maturity with which
She's taken this news
From the horror that any ten year old
Should have to be so mature

I came tonight to watch the grasses
Lit by the streetlight
Long after the sky is nothing but dark
To let the ripples settle a bit
From the latest stone
Tossed into my heart

Today they rode bikes
In the golden evening
Eyes bright
As if nothing had changed
And I can't decide whether that
Is beauty
Or tragedy

I came tonight
To where the crescent moon glows
In the deepest blue
Over the brightest copper
Behind the dark outlines
Of age-old pines

Because here nothing has changed
When everything has
I came to let out the ache
To whisper to the dark
To settle the ripples
And to breathe