I'm Fine

People ask me how I am all the time. I'm fine.

We all ask that of each other. For me, it has always been a ritualistic launching point for a brief exchange or a long conversation. Not lately.

How I am carries different meaning. How I am is relative, more real. Most people don't really want to know. They walk up innocently, ready for the familiar duet, expecting to hear that I'm fine. But lately, I'm anything but fine. What is fine anyway?
Volatile...that sounds closer.
Do get me wrong. Sometimes everything comes together and things move along...the day passes. A few days pass. Then there are the bad days.
Usually I bite my lips...literally. It's easier to swallow hard...force back the tears. Cry it out in the car, a pillow.
I'm overwhelmed, there isn't a solution, it isn't o.k.
Please don't say God knew I could handle it.
I use to live blissfully unaware of what it's really like for a mom with a disabled child. I knew that it would never be me.
You don't know what it's like. Neither do I.
My baby doesn't have the flu. There isn't a quick fix. There isn't a fix. I don't want one.

Appointments, laundry, carpool, dinner, scouts, piano, meetings.....I know you have them too.
Last week she said to ask for help. I don't know how to help myself....how can I ask you for it. Everyone loves an emergency. I'm not judging...I've always loved the adrenaline rush too. I have felt the thrill of rescuing a needy family in crisis.
But no one wants to climb in the mud with you. Not every day...that's too much...too long. No one wants to clean your bathroom, or your laundry. No one wants to be patient with your unruly toddlers. No one wants to....be too involved.

But today, I still said I was fine. I bit my lips. I made you feel better. I played the part. What else can I do.

Means

When you're little you dream of being big.
the future...what will you be...what will you do...where will you go

I've been...done...gone
lots

But, now I know
everything...the being...the doing...the going
is just a way to the means

for Today means = patience

That's Not Our Story

Over the past week, I've been pouring over blogs and stories of families of children diagnosed with CDLS. Each of them unique and touching....

It's impossible to control the stream of thoughts and feelings that pour through your mind,
your heart. It's hard not to let fear rule your vision of the future.

But I just remind myself....That's Not Our Story.

We have a story...

It started a long time ago...

One day, maybe, I'll be brave enough to tell it.