Tuesday, April 9, 2013

Struggling



I have been struggling the last few days.....wondering where I belong; feeling pretty much alone; sad; crying. I hate it when I get like this, but it happens and I deal with it. My boy, BJ, and his bride, Catie, listen and talk me through it. And I try to hide it from Ashley, because she already has so much to deal with.......but she knows me too well and figures it out.

Most of the time, I'm happy. But.......sadness hits me in waves now and then........

I woke up this morning to read this. Ashley had posted it on her facebook page. And it put everything in perspective for me. It was written by another SMA mama last night. This is the life my daughter lives. No wonder I get sad.

I Know Who You Are

I've seen you
In hospital hallways talking on your cellphone for the tenth time today
In the supermarket, by yourself, looking around as if guilty of a crime for being there alone,
In a small bedroom that is quiet, aside from the humming and beeping of machines
In the mirror many times before

The weary look you wear upon your face until you have the strength to put on your smile makeup
Getting up all times of the night at the slightest 'off' sounding noise... or no noise
Packing your van or SUV full of pumps, bags, medicine, DVD players, portable oxygen and an ambu bag..just in case..... and, Yes, a Van or SUV because you've had to upgrade from your sedan whether you wanted to or not

I've seen the sadness in your eyes
I've seen the premature wrinkling on your face
The gray hairs that weren't there before
Clairol can't fix this

You know about Holland
You've shared more inspirational pictures about strength, loving your children and saracasm than the average person because, after all, sometimes all you can do is occupy your mind to stop the thinking
You've befriended half a dozen (hundred) or more other people just like us on Facebook
and sometimes it feels like they're more family than your own...
or at least they've become better friends than those you know in real life because they understand

At least once someone has asked you "what's wrong with (fill in gender")
At least once someone has given your child that hideous glare
At least once you've heard the whispers and seen the glances
and at least once you've imagined yourself putting them through a wall
..... if only you weren't so tired.

Speaking of tired, you probably drink alot of coffee
or soda
or maybe both.
Or maybe you've taken to working out for extra energy
Well, the rest of us cheer you on.... from right here... on the couch

You have alarms set on your phone for feeds and meds
Your cellphone calendar is more of a social calendar for your child
You've got more doctors, specialists and therapists phone numbers in your phone than family members
You know your childs diagnosis and how to spell it
Even though the doctors don't
You could probably write a book on it
You've probably even already thought about it
But that'd take time, so instead you have started a blog or a Caringbridge
Even that gets neglected... unless of course they are admitted

I've seen your house
There is a small bedroom with a crib or hospital bed in it
There is equipment all over
Supplies are neatly stacked - possibly even labeled
Likely you've got a chair (or even a couch) in there too
It looks like a hospital room with the faintest hint of being a childs room
Pictures on the wall
Dora DVDS... or maybe Yo Gabba Gabba is your thing
It's probably pretty warm in there too, considering the heat the equipment gives off

I've seen your living room
It looks like a small gymnasium of some kind
Its filled with wedges, peanuts, bars, harnesses, mirrors, and even more equipment
Oh, and there's also a couch in there too

Back to you
I've seen you sitting there, late at night, when noone else is around
After everyone on Facebook seems to have logged off
even the people in other time zones
You've checked your email
You may have even remembered to blog (ha ha ha.. just kidding)
and it's quiet

You sit quietly and then you start thinking
You get that heavy feeling
That little lump in your throat
Especially if its been a 'bad' day
It's overwhelming
You replay the times you've heard "God only gives us what we can handle"
and "God chose you"
and while it's true, sometimes it makes you mad as if 'they' think thats a catchall
But they aren't tired
They aren't burdened - and not that is He/She is a burden, but the work is hard and it's heavy
It weighs us down
(and gives us wrinkles)

I'm here to tell you something
(places mirror in front of myself)
There is relief from it all
From the worry
For the weary
There is someone to talk to - any time
There is a promise
that you will see them walk
that you will hear their voice
that the time here is nothing but a moment
and that they will be healed
.....  and you've probably already seen the wheelchair gravestone, haven't you?  See, you know.

I can't promise it will be today
or even here on Earth
but let me tell you this
YOU have no control
so just stop trying
Just fall on your knees again
but this time not in self pity
This time not as a plea
but as a praise

Just to say thank you
For one more day, for one more moment, for the warmth of their little hand in yours, for the blinking of eyelids and the beating of heart
Say thank you that you'll be together
That you'll both be youthful, and healthy and whole
That you'll run together
you'll laugh together
You'll dance together before the King
and find rest.

You aren't supposed to understand
Just to love
and you're doing a damn good job.
People are still going to stare
People will still be human
But don't fault them... just press on
Be grateful for every kiss
For every caress
For the sweeping of hair off their faces

Because they chose you
They chose to come and be yours
What you have before you is a miracle in itself
They've come to teach you something
To help you learn what it is to be unselfish
How to find strength when you haven't had sleep
and that there is something bigger than us out there
In case their very time here with us wasn't enough evidence of His existence

"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28

You may shake your head or it may bring you to your knees
But it's true.

 © Samara Dulik  4/8/2013, from a hospital room, because its true