Skip to main content

when I would not

Some things you should know before reading the linked article:


There is a part of my heart that does not want to post this. It is too intimate. Too raw. To share it myself feels somehow cheap. Yet not to share feels feels like a breach of courage.


More than once I asked the reporter to find another family. Trevor's relapse has brought us to our knees and I'm so very weary. I'm weary of fighting. I'm weary of sharing our story for naught. Over the weekend Trevor had a seizure in the pool, which would last three minutes. When I close my eyes I still see his face plunging beneath the water as I tried to get to him. I still feel the panic of trying to lift his convulsing non-responsive body out of the water. I am soul weary with this battle. This battle which includes more than seizures, as if that alone were not enough. I just want to live and love my son in peace.


I know it's easier to look the other way and pretend these things don't exist. Yet, everywhere I turn, my line of sight is brimming with families like my own, thrust into a world filled with seizures and sorrow. I stand eleven years into this journey. My marrow burns with the knowledge that these families have a life time before them of finding the strength for advocacy as it relates to accessing treatment for their children. This knowledge compels me to speak when I would not.


Though images of our family fill the pages of this particular story, this is not a singular narrative. This is about every family navigating the horrors of catastrophic medical crisis. One day, that family may very well be your own.

Anatomy of a 97,000% drug price hike: One family's fight to save their son

Comments

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...