PANDAS Hell – Through A Father’s Eyes

I’m really sorry. I haven’t felt like writing for some time now. Sometimes I am just so utterly exhausted and overwhelmed from living our story that I just can’t bring myself to write about it. Over the past few months I’ve started post after post – unable to finish them. Unable to find the words. I think I’ve even been a little without hope. I actually told my husband that I was going to buy a Yurt and live in it by myself on the beach, because I feel like I have nothing left to give. I was only partly kidding. My bucket is so empty. It’s so hard to keep going with an empty bucket, while knowing that you can’t give up, can’t give in. This puzzle feels impossible to navigate. My friend said today “that it’s not even like we’re dealing with a straightforward puzzle…it’s like we have a million pieces and we need to find out which 100 pieces are the right ones and fit them together.”

So although I’ve been at a loss for words to describe this hell, this pain, this tormented life, I’m grateful to Josh Ducharme, a step-father to two boys with PANDAS/PANS, for writing the following poem, for speaking the words in my heart. PANDAS hell affects everyone in the family.

Credit: Jenny D Photography

I met Josh and his lovely wife, Jenny, at our screening of the PANDAS documentary: My Kid Is Not Crazy, but have known them from our support group for some time. We are instantly connected and united together in our fight for our kids and awareness.

Josh wrote this poem as a kind of “letter never sent” to their boys. It makes my heart ache and I can’t get through it without tears.

Credit: Jenny D Photography

PANDAS Hell by Josh Ducharme

Rest now child
Let your wet cheeks dry
Mommy is here
Eyelids can fall without struggle
Dream of sugar and chips
Princesses and mermaids
Dirt bikes and hockey players
Not darkness and fear
Conflict and remorse
Stolen cupcakes and lost childhoods

Awaken anew
Let dreams continue
Of trips to the beach
Make the winning basket
You’re a policeman on your bike
The best mommy to your doll
Those dreams should not have to include
Socks that feel right
Skin that is clean
Invisibility at the park
A throat that clears
Fists that don’t clench
And aren’t drawn to suffocating yourself

If this was like life or a shit sandwich
And more bread meant less shit
I’d sell my tortured soul
Pawn this distraught heart
Market a pound of flesh and
Buy back your innocence
Reacquire the lost time
Hire the electrician who could rewire this tangle
Security against this Thief
Plow through the pain my Baby
Ache for only this short time, though
No one knows your pain
Deep inside your soul
Arcs your true self
Set it free
Help me make it better for you Baby
End your suffering, for I am helpless
Languishing in pain for you
Loving you beyond measure

Credit: Jenny D Photography

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