Monday, January 2, 2017

The New Year - Turning the Page

I was flipping through Facebook yesterday afternoon, passively watching the Chiefs finishing their last regular season game (and clinching a first-round bye, thanks to Oakland's loss) when I stumbled upon a friend's posted picture. There was no caption, but only this:

I thought it was a simple, yet powerful message that everyone has a story to tell. Everyone is subconsciously writing a novel in their head, every day being a new chapter. It seems arbitrary when we always choose to dog-ear our inner autobiography with the flipping of another digit in the calendar, but nonetheless, the idea stuck with me the remainder of the Chiefs game and up until I went to bed last night. We all understand that life events realistically occur at completely random points in time and at any point along our traditional 12 month cycle - the birth of your child, the day you were married, the day you got to the 5th key on Pac-Man way back in 1982, or whatever that point in time was where created a fundamental shift in your life. A day of awakening in a sense. Finding this image in the endless stream of midnight Facebook posts of family, pets, or drunken debauchery, wasn't an awakening by any means, but it did get me thinking.

Mira has written a lot of pages in her book, only I wish we could actually read them. She has been battling with epilepsy since she was 11 weeks old and has been living in a constant state of solitude in a sense, where she cannot communicate her wants, needs or desires to anyone. She has moments of happiness, grief, and pain, but it is difficult to understand why, what, and how she feels at any given point in time. As the New Year today brought another rough day of seizures (a huge tonic-clonic about 2 hours ago after having countless intense myoclonics all day) her ability to be able to write a single page in her book, drifts further out of reach. We have slowly come to the conclusion over the years, that Mira's life will not change much from here on out - it has altered its course very little in the last 11+ years and most likely, will not dramatically shift paths. Her blog may seem redundant and full of trivial things that happen throughout her day, but it is the best attempt at being able to communicate her story, a page at time.

This image and the idea of personal story telling resonated with me, since every one of us has a story - we are mere observers in others' lives online and we only skim the surface of understanding. Facebook and other social media sites highlight this basic idea - we only know others' stories by their pictures and rarely do we truly understand what stories they have to tell. I belong to a plethora of support group on Facebook in particular, (prior to that it was the Yahoo health forums back in the 'early' days of 2005) where I  read countless personal stories of kids and families dealing with epilepsy. It is heartbreaking and encouraging at the same time. Parents are able to post videos of suspected infantile spasms, Mira's original diagnosis, and in the process, cast an extremely wide net, chocked full of opinions and support from parents who are currently dealing with the same issues. That immediate feedback is critical for kids and families dealing with epilepsy. It's that ever-expanding global reach that the internet offers, that I took for granted when Mira was first diagnosed back in 2005. We are now privy to the endless amounts of accessible data, information, and support we can find online now, a dozen years later from when we started this journey with Mira.

I want to be able to continue to tell Mira's story, but also to elaborate on other parts of her story, in an effort to potentially help others who may be struggling with the same issues we deal with as a family. We have three children - one child with uncontrollable epilepsy (Mira - 11), one child on the autism spectrum (Jonah - 8), and a third child (our oldest - Eli, who is almost 14) who has his own issues. Some of it could be chalked up to just being teenage angst, but some of his behavior could be something else - it is difficult to put a finger on, but it exists. This isn't about labels, but rather about support and guidance. All of the neurological issues that our children deal with, stem from somewhere or something, and include Sarah and I as parents. Recognition of this neurological 'flux' set me on an endless researching journey years ago, to the point that I have read and logged a considerable amount of research on the subjects of epilepsy, autism, and an understanding of neurological mechanics. I'm not looking for a 'cure' specifically (since I believe one does not truly exist, as neurology is vast and complex) , but more of an understanding of why, what, and how this occurs in our family, and how we can continue to function and thrive with it. There are parents out there dealing with the same issues we are. Some of those same parents are reading, researching, and contributing to the dialogue. Their support is invaluable. This is not to discredit any medical advice that we have been given in this journey, but rather to embellish upon it, with what I have discovered through research.

That being said, the pages and posts in Mira's book for 2017 will look a little different from here on out. I want her blog to continue to be an update on Mira and our day to day life, but I also want it to be a potential resource for parents who are dealing with epilepsy. I will be sharing a lot of technical links that I have discovered and researched over the years, hopefully shedding some light on how they potentially relate to not only Mira and our family, but to any other family who might be looking for answers and support.


Carolina said...

Thank you for doing this lay-scientist heavy lifting. Being in a fairly stable, seizures-never-going-away/quality-of-life balance with Ansel, I kind of stopped searching and reading those kinds of things. But there is always so much changing in neurology that it's important to know about.

Marc said...

Thank you, Carolina. It seems to come and go with me. Some weeks I don't read anything - the next week I will become completely consumed by a particular interest. I still get really deep into the weeds on some research topics, if I feel it would be helpful for Mira. In this process of trying to find answers, I have learned more than I ever would have imagined about epilepsy. Through all of the reading in the past 11+ years, I have gained a deep appreciation for all of the efforts of researchers, scientists, and medical professionals. You are right - neurology is so complex and seems to be constantly changing.