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...


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.


JSmith5780 said...

Trevor will find his way, give him time. It was about a YEAR until we saw consistent improvement with Austin. On August 2nd he will be 4 years SF of Infantile Spasms. The other seizures he has had periodically have been in no way as damaging as IS. He still struggles, he still gets therapy, but he is surviving and thriving. Time is what Trevy (and all our kids) needs.

hugs to your little cutie

Molli Salzman said...


Thank you for being a voice. A voice for all of our children and famillies dealing with IS. You truly are an inspiration to others who are beginning their journey with IS(like me:)

Oh, I tried to access Charlie's carepage through your link and it is not working, at least when I tried it wasn't.


Monica, James, Connor McGuire said...

I know what you mean about the question marks in the eyes. i feel the same way often about Connor. Like he's just screaming on the inside, but can't understand why we can't understand him. I would give anything in this world to hear him scream to the top of his lungs. I guess that's why IS families don't take any milestone for granted.

baby trevor's mommy said...

Jen - I'm a really bad wait-er! ;o) But I know you're right...I need to give him time. In fact, he had a really good therapy day. Just when I thought we'd never see forward progress.*smile*

Molli - thanks SO much sweetie! btw...I think I fixed Charlie's link. It was working a minute ago at least! The new pix are a-dor-able! I'm glad you pointed it out...I get email updates and never use the link now.

Monica - Aren't those question mark eyes just so bitter sweet?! I'm thrilled that he looks to me...mommy...but so sad that I can't make everything easy for him. Ugh!


Sophie's Story by Elaine said...

Your post took me back to THAT DAY. The day Sophie was diagnosed and we drove straight from the neuro's office to Children's Hospital with our hearts shattered to pieces. I never cried so hard in my life. She was admitted, numerous tests were performed and she was started on ACTH. I never thought twice about insurance. Everything was paid for. I cannot imagine having to battle insurance in the midst of all of this. I have always said that I am so fortunate to be able to get the best care for Sophie. I never asked "why me" but "why Sophie". In other words, I had the means to take care of her but it is heartbreaking to see your baby girl go through this. But what about those that don't have the means (whether fighting insurance coverage or otherwise) to get the best care for their babies. My heart breaks for them. I am so incredibly sorry that you have to take this journey with Trevor but I am so thankful that you are such a strong advocate.

labonte4 said...


We did ours back in the good ole days when ACTH was 1500 per vial...and even then....when the neuro's office called the pharmacy to order the ACTH for us at home, they had to fight them to pay....at 1,500 per vial! I really hope that your voice, along with the others that need drugs such as this, were heard.

I've been totally slacking on my blog, so I just read yours & hope your faithfull posting abilities will rub off on me!

Also, I'm currently in a vaccine tail spin *LOL*. And....waiting...waiting...for our SCN1A test to come back.

baby trevor's mommy said...

Elaine - that is how I think it should be! Your baby is diagnosed...and you move forward with treatment. We shouldn't have to worry about insurance approval or worse being denied and not even being able to access the treatment! *sigh* Even though I wish this were not our story...I'm thankful that I've had an opportunity to hopfully effect some change. Sen. Klobuchar is an amazing advocate for children...I think she'll keep moving forward & figure out a solution.

B - Grrrrrrrr...it makes me SO mad that ins cos were denying coverage even before the price hike! I certainly think they have blood on their hands too! Our's specifically...it's supposed to be a *ministry for missionaries*...until your child is diagnosed with a catostrophic/expensive disorder! Obviously I've got some bitterness to resolve! *wink* Anyway...I left you a message. I'm not ignoring you if you call back...I just have no cell mins left & J put me on restriction! lol