Twas the night before Christmas
And all through the house
The whole family was sleeping
Except the mom of the house
While her children were nestled all snug in their beds
Unthinkable thoughts danced in her head
She tossed and she turned and she thrashed about
She prayed for some peace that would not come about
She had things on her mind that kept her awake
Reality she faced that made her heart ache
Down the hall she flew at every little noise
Checking and re-checking, tired and annoyed
Her hand on the chest of her youngest born child
Rose thankfully and smoothly and she allowed slight smile
Then what to her panicked eyes should appear
The start of a seizure that paralyzed her with great fear
An action so unexpected, so violent, so quick
She knew in a moment it must be a cruel trick
She’d let herself breathe, for a moment dared hope
And all in an instant her hope disappeared like smoke
Why Lord, why this,
Why her, and why now?
Oh Jesus, oh Lord,
Please stop this somehow
What more can I do
What more can I say
Please tell me, is there anything - anything I pray
To take it away, take it away, take it away now?
Her head, in her hands, she sat down and cried
She knew in her heart it would not be the last time
So she gathered her strength and got to her feet
With a heavy heart she made her retreat
Back in her bed where she should be sleeping
The night ticks away while silently keeping
Her innermost fears and her pain from the world
While she worries and dreams of saving her little girl
It’s not possible they say, we’ve done all that we can
Some people are not meant to have a long life span
We know how you feel, we know that you can
Begin to put together her end of life plan
Her eyes, how they’d twinkled, her smile so merry
Her face once so welcoming, was now solemn and wary
Her hugs and her kisses had once been enough
To keep the child going when times were so rough
To the rest of the world she just couldn’t show
The signs of the turmoil she kept hidden below
And the hair on her head turning white as the snow
She had to admit that she just didn’t know
What to do, where to turn and it tortured her soul
Her thoughts turned to Christmas, she needed some joy
She’d really tried hard to find just the right toy
She started to cry as she tossed in her bed
She just could not shake her feelings of dread
Christmas morning she rose and went straight to her work,
Even on this day her duties she did not shirk
She gathered her family in front of the tree
And all she could think about was how happy they should be
For always there is love, for this moment there is hope
And the best hope can do is to help her to cope
And she hoped in her head as she clung hard and fast
"Happy Christmas to all, pray it not be our last!"
#Seizure Disorder#ParentingAChildWithChronicIllness #Love #Hope #Epilepsy #Seizures #Hemimegalencephaly
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