Microcephaly Awareness Day

May 30^th, 2013, sixteen months ago today, I went in for an ultrasound.  I was 39 ½ weeks pregnant.  That afternoon I received the news that would change my life forever.  

I have spent the past 16 months learning about Microcephaly.  First I read every website, medical journal, and blog I could track down that would give me a little insight into what the term “microcephaly” even meant. I was terrified by what I read. I made appointments to see any specialist or doctor that would let me through their doors, hoping and praying that eventually someone would give me the answers I was desperate for. They didn’t. I spent hours staring at this tiny baby that I had made, and wondering what his life would look like, or if I had it in me to give him what he needed. 

What was Microcephaly and what did it mean for my life? For Dylan’s life?

As time went on, I learned that the words I read online or the predictions given by a doctor would never define Dylan, or define our experience with Microcephaly.  I stopped trying so hard to find the golden nugget of information, finally realizing that it had never really existed in the first place.  Because the genetic form of Microcephaly that Dylan was born with is very uncommon, and every one of the few cases I was able to read about was completely different from the last.  I came to the conclusion that Dylan is going to develop into his own unique little person, no matter what Google or Dr. So&So says.  It was a freeing conclusion - because I could stop trying so hard to figure everything out right now - but it also left me feeling powerless and completely in the dark as to what Dylan's future, my future, would hold.

    

And so began an unbelievably lonely sixteen months.  Sixteen months of 2-4 therapy appointments a week, countless visits with various specialist, and a whole team of Dylan’s providers that were continually impressed with his development but had no idea what we should expect next from him.  Sixteen months of knowing that Dylan was loved by so many people, but not really understood by anyone (including myself). There were days when I would cry, wishing I could have just given birth to a baby with Down Syndrome.  If I had accepted the fate of raising a child with special needs, why couldn’t he have a diagnosis that came along with a support group meeting every night of the week and hundreds of thousands of websites with information on what to expect and how to make it all OK.  Microcephaly was a very lonely diagnosis.

And then today happened. 

 And honestly, truly, I feel like I have a whole new understanding of what it means to be supported by a community of people.  And, for all the bad rap that Facebook gets, it sure does make this journey I’m on a whole lot more tolerable. 

For those of you who aren’t connected with me on Facebook, or who might not even understand the significance of September 30^th, let me take a step back and fill you in.  Today is Annual Microcephaly Awareness Day.  The purpose of the day is to simply raise awareness for this neurological disorder, primarily by encouraging people to wear yellow (the symbolic color for Microcephaly) and talk about their experience.  It’s a world-wide push, mostly communicated through Facebook groups.  Two days ago I made a plea to my friends to join me in wearing yellow and spreading the word about Microcephaly.  I expected my family to comply, maybe a friend or two that happened to have a yellow shirt on hand.

But wow.  What happened instead was pretty remarkable. 

My facebook newsfeed was absolutely flooded today with pictures of people wearing yellow.  In addition to the pictures, there were posts where my friends were sharing information about Microcephaly and introducing Dylan to their circle of influence.  Multiple people reported that they were able to strike up conversations about Microcephaly throughout the day, both with coworkers and total strangers.  I brought Microcephaly Awareness treats and an informational card to Jack’s preschool, finally able to break the ice with a new group and tell them about Dylan. I think it is safe to say that hundreds…no, probably thousands of people heard the word “Microcepahly” for the first time today, just because Dylan’s story was shared.  While that might not seem like much…we didn’t raise any money or find a cure or organize a city-wide rally…from my isolated position of raising a child with an unfamiliar diagnosis, it means the world. Because it means that I no longer feel so alone.  The ripple effect has started, and people around me are beginning to understand Microcephaly, as much as it can be understood. And, boy, does it give me encouragement for what we can do together in the future!

I went back today and re-read my blog post from September 30^th 2013.  Dylan was 4 months old.  I was absolutely TERRIFIED of what came next.  I stayed pretty quiet on Microcephaly Awareness day last year. I wrote a little blog post, read by a small handful of people, and felt like I had done all that I had the capacity for at that time.  But I truly believe that Dylan’s story is an important one, like all of the kids living with Microcephaly, and I intend to keep telling it, hopefully louder and louder as time goes on.  Babies are being born with microcephaly every year (every week? every day?), which means that there are new moms and dads being given a diagnosis that they have never heard of before.  New moms and dads staring at a newborn with a tiny misshapen head, wondering how they will ever be enough.  And the truth is…they won’t be enough on their own.  I would never be enough for Dylan without support.  And raising awareness is the first step on a long road.     

Thanks to everyone who talked about Microcephaly today!  Keep talking! Years from now, when I tell Jack and Dylan about this phase of our lives when everything was still so new and overwhelming and intimidating, I look forward to telling them the story of today and all the love that was poured out on us.  And for those of you that weren’t able to wear yellow today…I’m giving you a one year notice!  Mark your calendar for September 30^th 2015.  I wonder what we will do together…?

Here is a little sampling of the love that was shared with us today.  Look at all that Yellow!  Thank you to everyone who was on #teamdylan today.  And I'm sorry if I missed anyone!  There were ALOT of posts to sort through!

Microcephaly Awareness Day cake pops, shared with Jack's preschool Class.
What a great way to open up a conversation with the other parents...because who can say no to a cake pop?!

My crazy, enthusiastic 3 1/2 year old Jack...so excited to bring cake pops to school and wear his new yellow shirt!
He didn't understand the significance of today, but he loves any excuse to celebrate!