Monday, April 20, 2015

Rewind

Ah, writer’s block.  You stink.  But today, I need to say thanks for the inspiration. 

I wanted to do some writing today but didn't know what to write about.  I looked though my writing folder this afternoon for some ideas and found this entry and the booklet I mention below.  I wrote this a few years ago.  As much as I’d like to have been able to fast forward to some sort of recovery by now, it sometimes feels like I’m in the same place and experiencing the same emotions.  The same emotions, the same struggles, the same worries.  They've stuck around.  But so does a lot of determination and a great amount of hope.  

I’ll never let go of that hope.


xo, Cat


I started writing about my son years ago.  Initially, I only shared that information with immediate family and close friends.  I was very private about what was happening because I honestly didn’t know what was going on.  Ronan had just started some therapy for some minor delays.  I wanted to find out why he was starting to have troubles, so I began intensely researching.  I visited several libraries and always found my way to the medical shelves in the library.  Stacks of books too heavy to lift always came home with me.  I’d fill the pages of those books with post-it notes bookmarking topics to further research.  I made endless lists too--lists of words and phrases to that I’d come across.  I’d never heard of them before and made notes to look them up.  I took a lot of notes and learned how to bookmark websites that I thought might aide my searches. You’d think I was in pre-med with all the literature I was reading, recording, and forwarding to our immediate family and friends.

My husband encouraged me to write down a little bit of what I had discovered for other reasons.  He wanted us to be able to give Ronan’s story to anyone who asked us questions because it was clear that something was wrong with Ronan's development.  Ronan could do some things like a typical child could, which we were thankful for, but he had behavior issues and developmental delays that scared us.  Since retelling Ronan’s story over the phone or in a quick email was taking longer and was getting more complicated, it made sense to document everything in one place. 

I’d studied child development in college and had a successful career as a teacher in elementary classrooms before we started our family. I’d only taught typically developing children during my career.  Ronan’s lack of development truly puzzled me, but I was determined to find out what happened to him.  

Over time with all the reading I was able to do, I finally had my a-ha moment.  I discovered that Ronan’s vaccines contributed to some of his delays.  At first, after I wrote everything down and confirmed what I could while cross-referencing medical literature, as well as Ronan's medical records, and I couldn’t believe what I was reading.  But, it all made sense. Ronan was vaccine injured. 

I’d never heard of vaccine injury before.  It sounded far-fetched.  Surely that couldn’t happen to children.  Could it? 

The only information I knew about vaccines was that I’d had them as a child and that I’d opted to get them for my own children.  Once I took a step back and let all of the information I'd researched sink in though, Ronan’s out-of-the-blue sicknesses weren’t really so out-of-the-blue.  The small changes from his slow and steady progress to the tumultuous regression he experienced was clearer.  The agonizing irritability that normal babies were just not supposed to have but Ronan did couldn't be ignored.  When I looked at the shot record and the descriptions of Ronan’s reactions to those shots and to when he had them, well, that was vaccine injury. 

It all made sense. And sadly, vaccine injury could happen to children, children just like Ronan.  

When I made that conclusion, when I was able to connect all the dots, I started to ask other parents about vaccine injury.  Some parents had heard of it while others had been able to spare their children from it.  Local friends could only help so much, so I reached out beyond my comfort zone and joined message boards.  I also learned how to navigate the internet better and searched scientific journals.  I scoured health news websites and continued to check out medical books.  I read as much as I could and made it a point to share as much relevant information as I could with family and friends.  

Friends and family remained interested in my latest discoveries.  They were always excited to hear that Ronan was able to make some gains in his development despite being so sick.  I owe it those who people who checked in on us, who offered comfort, and who offered advice during those early years.  Those years were very difficult.

Support for us, and especially for Ronan, was offered by many people. It helped to have a group cheering for Ronan as he worked though his major delays and as I worked through the emotions I was experiencing. 

--The Booklet--

The original story I put together included Ronan’s history with a list of helpful links and resources.  I thought making it and sharing it would be a gentle way to break the news to everyone who remained interested in Ronan's story.  The booklet was also a means for me to share that most of what happened to Ronan could have been prevented.  

Now that friends and family they knew what we knew, we hoped that they could make better decisions than the ones we did about certain medical treatment options.  The biggest message we sent, besides asking for continued prayers and support, was to ask those we loved to educate themselves before they vaccinate.  Please.  They’d already heard that message with previous emails and phone calls from us.  I was starting to feel like I had to have a permanent soapbox attached to my feet as I shouted medical statistics and health-related information.  I kept doing that because I didn't want anyone to go through the issues we were having if they could have avoided it. 

We shared the booklet with some people, emailed it to a few more, and then forgot about it while trying to keep up with Ronan’s on-going medical needs.  That was way back in 2006.  Life has changed drastically as we have gone from one doctor to the next, from a simple diagnosis of globally developmentally delayed to much more serious ones that I don’t fully understand. 

I stumbled upon that old booklet file on my computer not too long ago.  It was during a writer’s block moment that I found it.  That moment included me panicking about telling Ronan’s story.  When I was asked to contribute a chapter for a book I was all for it.  I love to write!  I love to help people!  I love to teach others and to share Ronan’s story!  It sounded like a perfect opportunity.  But then I honestly couldn’t figure out where to start writing my chapter because I don’t know how Ronan’s story will end.  Every story needs a beginning, a middle, and an end.  

I know the first two parts of Ronan’s story fairly well, having lived through the beginning and now experiencing the trials and the joys of the middle of the story right now.  But, the end?  I hope the end is a recovery, a healing, a burst of typical development leading to more typical development and independence.  It’s difficult sometimes to think about how to achieve that yet alone write about it! 

I know how I want Ronan’s story to end—with a full recovery, with all of the struggles behind me and behind him.  I want him to be able to play with his brother who desperately wants to share his LEGOs.  I want to hear Ronan talk and to ask questions instead of being surrounded by frustration and silence.  I want to see Ronan grow up and be happy, healthy, and independent.  But, Ronan is not near that point yet.  Lots of work, and maybe just as many years that have already passed, are between now and recovery. 

While brainstorming for that chapter, I went back to that writing folder and opened that old booklet file and relived the hope of what I had written years earlier.  It looked so sweet and quite short compared to the time it took to realize that something was wrong with my son.  Funny enough, rereading that booklet made me laugh.  I thought it was such an epic tale at the time.  It even had appendix pages!  Cute pictures of Ronan adorned the pages to remind whoever read it that hey, this kid is cute!  And, sure he’s a cute kid, but Ronan is also so sick.  I didn’t realize at the time how very sick my child was.

--Cat Tale--

Ronan’s story is much longer than that short booklet that stayed tucked in my writing folder.  The story of how sick he is continues despite how desperately I want the tough parts of the story to end and how desperately I'd love to add a happily ever after ending. 

I’ve continued to write about Ronan for several years now with much of my work showcased on several blogs.  Of course family and friends are still receiving Ronan’s updates, but my thoughts and ideas now reach many more people.  Readers want to know that I have am hopefully ever after looking for Ronan’s recovery.  They like to hear that Ronan is growing up and is able to do more despite his delays.  

In my writing, I voice concerns that I have as a parent of a child who faces possible life-long disabilities.  Through the connections I've made with others, I’ve found with quite a few other parents like me.  They are a determined bunch.  Through the years of reading and through the many contacts I’ve made, I continue to reach out to other families who have also made the same awful discovery that I did—that vaccines did something to change their children’s health.  Never in my wildest dreams did I think I’d be a part of a movement whose goal is to fix a broken health care system and to address politicians about the broken health care system!  But I have witnessed all of that and more thanks to the people I have met because of Ronan. 

When Ronan lost his voice around the same time he got sick, my voice grew stronger.  I am grateful that I can stand up for Ronan and his needs.  Someday, I hope that when I look back at my writing folder, I can flip through some of the entries that have painful topics and not be so affected by those topics.  Those topics are important to share, but the ones I’d like to revel in are the gains.  Wouldn’t it be great if we could just fast forward through the past and jump into a future where only gains are attained?  Yes, that would be nice.  I know that's not how life works, though.  

For now, I'll work in the present, and I'll continue to write.  I'll work with what I have.  I'll work with what I know.  I can never completely ignore the past for it's what got me here today.  But I promise, no matter how much pain the past has caused, I will work hard to set my sights on the future.  



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