Today

I went here

and my head exploded at seeing the ride on mower in the quiet zone.

and my head exploded at seeing the mower in the quiet zone.

And I wore this

Turtle.

Turtle.

And I brought these

Green for turtles, green for mitochondrial disorders.

Green for turtles, green for mitochondrial disorders.

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And then I did this

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When I arrived, there was a homeless man playing guitar next to the Imagine mosaic.  There’s always someone there singing and or playing.  But usually, they’re singing Imagine.  Today, as I walked past, he was playing and singing Let It Be, the song Nerd Child played and sang at my mother’s funeral.

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I did this in honor of an exceptionally brave little warrior.  Friends across the country released balloons or planted bulbs to show support, respect, love, and mourn with a friend when we couldn’t be with her in person.

While I was in Strawberry Fields releasing balloons; a friend, along with her husband and her daughter, was laying her six year old son to rest many miles away.  Too soon, too short, too heartbreaking.  Mitochondrial disease is something that most people have never heard of, but those who know it, know it all too well.  It’s an umbrella term, the name covering many sub-disorders, but all affect multiple systems of the body.  The mitochondria are the powerhouses of the cells, bringing oxygen, converting food to fuel and energy. Some forms of mito disease are more aggressive than others, and different people are affected to varying degrees.  There is no cure, not much in the way of treatment, and understanding of mito diseases is really in its infancy.

I’ve never met this friend in person, never met her son, but I know her, knew him, wept for every setback and cheered for every discharge from the hospital.  I’ve already blogged about online friendships, how very real many of them are.  But some have a depth I have no words for.  Medical needs moms, special needs moms, the communities and friendships developed are invaluable and indescribable.

Mito sucks, epilepsy sucks, cystic fibrosis sucks, cancer sucks, neuro-transmitter disorders suck, von willebrand’s disease sucks, CDKL 5 sucks, all the assorted disorders rare and otherwise that most-people-can’t-even-name-the-color-of-the-ribbon suck.  But the friendships, the support?  Beautiful, pure, sometimes gut wrenching and always filled with love.

Rest in peace, sweet boy.

16 comments

  1. Reaching out a hand, holding tight… wishing we could have been with our friend today.

    I planted a spring bed while you released your balloons, including tulips called “Big Smile” and “Daydreams.” I thought they were so fitting.

    He was incredibly brave and strong, stronger than any child should ever have to me… as is his family.

    Like

  2. an incredibly moving post mrs f! You have such a beautiful heart – I’m sure your friend is very touched with your gesture. My thoughts and prayers are with them and you. To bury your own child, I can’t imagine…
    xo

    Like

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