Thankfulness took on a different meaning for us over the past several Thanksgivings. For some unknown reason, this is when Sarah has had some of her worst episodes…

On Thanksgiving day 2013, just months before we were married, Sarah began to have her episodes where she would began breathing hoarse breaths, walk with a Jack Sparrow sway, and then collapse. Those are episodes we are still waiting to disappear.

Two days before Thanksgiving in 2014, Sarah had an acute crises which began her outward neuro manifestations and other horrors. Praise God, we are not where we were then.

Roughly around Thanksgiving of 2015, Sarah began having issues feeding herself and began needing increased assistance. This thankfully subsided. 

The day before Thanksgiving of this year, Sarah had intense chest pains, labored breathing (more than usual) and couldn’t lift her left arm without extreme difficulty while I began exhibiting symptoms from one of the last times I was hospitalized. 

I wrote this poem while looking at Sarah sleep, feeling alone in my thoughts. 

This Thanksgiving while everyone is placing hashtags around “Thankfulness,” I could  join many of you with a thankful heart, We wonder with gratitude what could have been avoided this Thanksgiving and what God may have protected us from. 

 


I can’t believe we are still on this journey that feels endless.
Moments to breathe and reprieve but I can’t understand what seems senseless.
Sometimes things aren’t comprehensible but we go on like the record hitting replay on a song.
If I voice how I feel will it take away the pain of the cold steel slicing through when it’s trying to heal?
What’s the deal? Upside down my world became and sometimes I wonder what is real?
Yearning for a painless world with no suffering is a hope that’s consuming and burning.
The wakes of the earthquakes I’ve weathered tossed in the sea- I’m churning.
The waves hit as I consume air but swallow the salt water.
I’m burdening you by now. I should stop so why bother?
America where are you? Starring the world in the face is your fear.
Looking for authentic but can’t be vulnerable and shed a tear.
I know you want to distract yourself and look away there goes the time, it’s another year.
Not for me can’t you see that I share it and wear it written on my face and my voice makes sound but you can’t hear.

I know I used to do it too until I walked more than a mile in the fellow sufferer’s shoe.
That memory comes back and I see her face with a glow from the Divine love bestowed on us sublime I just knew.
She smiles but her eyes show the joy of her soul while she dances with me but our souls dance as if outside of time.
Makes me believe I can do anything; Mount Impossible here comes my climb.
I live these feelings over and over again as they replay in my mind…

I’m thankful every day is not that day I wrote this poem. I’m thankful that although both of us used to care about the words of struggles from others, we now care much more intensely. When I see a status update from a friend who is going through their own pain, I share with Sarah and we both feel a pain we didn’t in the past and try to pray on the spot. I wanted to say those words so everyone who reads this will not think of this as just laments from a sad guy, but from someone who is truly thankful.

When struggles you never thought you would face enter in unexpected, you find a renewed meaning for thankfulness. 

We are thankful for you all,

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