April 2019 – Samsmom

I posted something cryptic on Facebook Saturday. It caught a lot of attention from my tribe but it really wasn’t a big deal….

Nothing like seizures, mitochondrial strokes or premature death.

I joke because I can.

Because I have survived these things.

I watched the EEG of my daughter explode. I have held hands in the PICU, I looked at a tiny pink casket, our tribe has buried our Littles before their time. I have gone toe to toe with a PICU doc and won.

I am a badass. I run with Badasses; I am proud of the strong people who have held me up and who I have held.

And yet.

At times.

Silly life shit takes hold of me. Suffocating. Like that stupid snake in the Jungle Book. It starts at my ankles, moves up my knees, my tummy, constricts my heart and looks me straight in the eyes. Sings to me and lulls me into a sense of doubt, confusion and negativity. Trust in me…..just in me….

I hate it.

Because silly shit is not worth suffocating over. I buried two babies and still managed to put my pants on and brush my teeth.

Silly shit is not worth it.

But I think all of us who have suffered trauma deal with this; cars cut us off, people are jerks, friends disappoint us, egos get in the way, Facebook pisses us off. These are not life and death situations. But in my mind, I expect the inconsequential to roll off my back and when it does not, it rattles me more.

I could place a cath in 10 seconds, deliver rectal Valium and I never gave it a thought. Why does this rattle me?

Perhaps this is the evolving trauma process…..what do we do after trauma when real life makes us crazy.

After we put our pants on, brush our teeth, go to work, cross the street….what happens next?

And really, I don’t post this as cause for alarm.

Because cause for alarm is another issue. I sometimes feel us going through all of this are afraid to post our struggles, because we don’t want to cause alarm. We are okay, really. We cry in ours cars, we get sad but we are here, really we want nothing more than to relish in joy and live our lives.

So a question for all of us and real life; what are your tools? What are your tricks for dealing with the silly shit? I invite all ideas J

Happy Spring!

“We’ve GOT to make noises in greater amounts! So open your mouth lads! For every voice counts!”

Ah, thank you Dr. Seuss.

Rare diseases are tough. And made even more challenging when one constantly has to explain the severity of mitochondrial disease.

Energy…..tired…..

But so tired that its hard to move your jaw up and down when chewing food? Or when you walk up a flight of stairs, you feel like your feet are made of concrete?

I do not know this tired. I have seen this tired. And even more extreme, I have seen how a brain that is tired can turn against itself, creating chaos in the form of seizures.

Energy is everything. Energy keeps us alive.

Last Friday I got to sit in a room with the FDA and talk about this energy disease. I sat with parents of impacted kiddos, adults with onset mitochondrial disease and caregivers.

And for a day we were not rare. We were a voice. A collective, impassioned, tired, loud, committed voice. We sat and listened to stories told by our peers, nodded in agreement because not many know the life of mitochondrial disease; the severity, the fear, the unknown of a complex disease.

For a day we were heard; our voices recorded and hopefully taken somewhere within the walls of the FDA where drugs for other diseases could be approved for mitochondrial function, where drugs for orphan diseases could be fast-tracked through approval and supplements could be covered by insurance.

We had an ear for a day.

“Thus he spoke when he climbed and when he got to the top, the lad cleared his throat and he shouted out YOPP!”

My our YOPPs be heard.