so what's the point?

Welcome to the question of the week. Specifically regarding my recent testimony before the JEC.


Like every good answer...a blog post is birthed...


::smile::


Even though I make an effort not to show it too often...the truth is...not a day goes by without my heart pinching me. The mostly likely timing is when Trevor gazes at me with those huge eyes of his. In them are shining giant question marks. Question marks that express what his little mouth may never be able to. He looks at me as if asking for mommy help. Like he's trying desperately to figure out what all these sounds mean. He senses that they have meaning. But his little brain is struggling to make it all work together. He often concentrates hard on our lips as they move. Something so basic. The way a baby learns speech. But right now no one is certain if Trevor will ever master this basic skill. The spikes in his EEGs do not write a happy ending.


Those are the times when my heart squeezes so tight that tears pop unexpectedly into the corners of my eyes. When it is most likely deep in the essence of who I am that I can't help but wish this were not my story. Not his story. That we were in Tanzania right now...and he were already babbling Swahili words like his sister did at his age.



But it is our story. And nothing can change that. Even if that has changed us.



I've soul-struggled about even making the attempt to find words. Because frankly, I'm quite certain I am not gifted enough to fully communicate what exactly the point is to those outside the walls of IS. And the battle to access treatment. And the uncertainties that fill the days forward. Although, there are a select few who have the God-given ability to empathize. It is truly a gift. Cherish it...if you hold it. There are some who don't understand. Don't get my passion. Nor would I expect them to. Because many things in life are only understood when lived. As we...and I mean the IS community as a whole...have.



Speaking of which...I have not been asked even once by a member of the IS community to define my reasons for going last week. I think we all have an unspoken understanding of why it is so important to advocate for these babies. It is etched on our souls.


The nightmare that became our reality on the day that Trevor was diagnosed with IS changed me completely. I'm not sure if I'll ever recover. Then again...maybe I'm not supposed to. And while some may think it's the pinnacle of selfishness with all that Trevor has already overcome...the uncertainty of his future still at times clouds my joy. And refreshes those feelings from six months ago.


The fight that followed the nightmare changed me as well. Up until our insurance denied Trevor's coverage...I really had no idea just how ferocious my mother's love could be. The anger that boiled up was consuming in the moment. And the battle wounds left scars on my heart that are still not fully healed. Since those beginning days I have learned much about the how the price point for ACTH arrived at where it is today...somewhere close to $40,000 per vial. The struggle to gain access to his medication delayed Trevor's treatment by a week. And as one intimately familiar with the devastation brought by IS...and the urgent need for medical intervention...I feel violated. By both parties. The insurance company. And Questcor.


And the same mother's passion that rose up in protection of Trevor...involuntarily rises up to protect the babies & their families that will walk this road too. The same sadness that pinches my heart when he flashes me the question mark eyes...pinches my heart for the mommies & daddies that will be staring into little question marks of their own. Some things are felt too deeply for words. Ultimately...that's how I would classify the emotion in me that wants to protect those future IS babies. To protect them...and provide them options. I can't define it. I only know it's there. Saturating my heart. And eyes.


And that is the point.