Darkest Side of Dawn

      It will be 11 years this December, a week before Christmas that the kids were diagnosed through their symptoms with SDS.  I feel like we have come full circle.  We are back to where we started, sort of.  Waiting for test results, hoping it won't be as grim as the medical vocabulary sounds.  There are plenty of sleepless nights let me tell you!  Someone stopped by today and commented that the problems we are facing with the kids is nothing new.  Well, as I thought about this, it is new.  It's new for me.  11 years ago I could hardly believe what I was hearing.  I didn't want to believe what I was hearing.  Over the years, I have followed an e mail support group of SDS families and each time a child slipped away to the great world beyond or was confined to a wheelchair, I thought to myself, "I'm glad that's not my child.  My kids aren't going to be that sick, they have a mild case."  When you stare past the truth and as far into denial as you can get, then the landscape changes.  It becomes manageable, normal even.  Someone has hastily torn the bandaid of denial from my life and I am staring at something I never allowed myself to see before so yes, this is news to me!  This is real now and it's real scary at time.  Scary to think of catastrophic medical expenses and it all lays on my shoulders.  Who knew I could be so strong? 

       A couple of months ago, a 2 year old girl drowned in a canal nearby.  She did not make it though her valiant effort to live was admirable.  I have been following this young couple on a blog they have.  She was their only child.  I have been inspired by the 'mantra' this young mother has adopted and I think I may have to hijack it for myself.  "I can do hard things!"  We all have to do hard things.  I am going to have to do some really hard things, hard things everyday!  If I want to make it home, and I do, I must be courageous, I must do the hard things.  Sigh.....I think I underestimate the trials and tests that God can give me but I can't lose hope.  I just can't. 

     This is a poem I wrote one early, early morning shortly after the kids were diagnosed, just as spring was waking for a season.
         Just before the daylight, peaceful like a song
        The world lays still and quiet
        On the darkest side of dawn.
        The breeze is cool, the smell is fresh
        The crickets count the time.
        The birds will soon awaken with their trilling tones so fine.

         A new day is dawning a perfect hope awaits.
         Everything is right now as slumber takes its bait.
         How is it that the darkness engulfs my soul with rest
         When light is what I really need
         To see that first step best?

        The silence echoes all around, weariness has gone to sleep
        Like the lonely cricket, this moment is mine to keep.
        Soon the sun will break this peace
        And freedom snatched away
        Comes a day of madness, robbing my heart as it may.

        For now I'll put the peace away
        Prepare myself for war
        The war I've waged upon disease
        And isolates me evermore.
        Who will win, the light or dark?
        Can I ever face the doubt?
        To make it alive through one more day
        As my soul continues to shout.

        But now the silent shroud of night
        Reminds me of my journey long.
        I'm tired and I'm weary
        On the darkest side of dawn.