Awareness

Today, September 30th, is National Microcephaly Awareness Day.

One year ago today, September 30th 2012, I was completely unaware that Microcephaly even existed.  I was unaware of the thousands of families that are affected by Microcephaly.  I was unaware of the many children living with Microcephaly and the challenges that they face every day.

One year ago today, September 30th 2012, I found out I was pregnant.

What a difference a year makes!

The past twelve months have been...challenging, amazing, emotional, dramatic, influential, challenging (did I already say that?), heartbreaking, wonderful...and memorable.  I don't believe we have ever had a 12-month period in which SO MUCH has changed.  We found out we were pregnant with our second kiddo, bought a house, celebrated Jack's 2nd birthday, sold a house, moved (when I was 7 1/2 months pregnant!), welcomed Dylan into our family...and after all that, experienced a VERY stressful four months!  I would never change a thing about my life and I am beyond thankful for everything I have been blessed with, but it has been challenging, to say the least!

So today, Microcephaly Awareness Day, really got me thinking about everything that has happened in the past 365 days, since those two little pink lines showed up on the pregnancy test that changed my life forever.

At the risk of sounding selfish and insensitive, I never wanted to be as "aware" of a disorder such as Microcephaly as I am today.  I never dreamed that I would have the need to learn this much about something as uncommon as Microcephaly.  I never imagined that one of those "it will never happen to me" scenarios would play out in my family like it has.

But in our present situation, we can only make the best of of our blessings and challenges.  And, as hard and emotional as it has been, we have no choice but to be very, dramatically, emotionally, and 100% AWARE of Microcephaly.  And, friends, if you are following along with our journey, you too have become aware of something that, most likely, you never knew existed before you met Dylan.

So, if nothing else, today you know that Microcephaly exists.  The word "Microcephaly" simply means "Small Head."  In many cases, the cause of the small head size is unexplained.  It can be genetic, due to an injury or virus during pregnancy, primary (present at birth), secondary, or associated with a more complex syndrome.  It typically is associated with developmental delays, but the severity of the delays is all over the board.  The cause for Dylan's Microcephaly is still unknown.

I am so new to this world, and while I would love to spend each and every September 30th from this day forward raising awareness for Microcephaly, I admit that this year I mostly just sat back and observed.  I dressed Dylan in yellow (the color symbolic to Microcephaly Awareness), posted his picture on the Foundation For Children with Microcephaly Facebook page, and went on with my day as if it were any other day.  But the truth is, my life has been changed by a diagnosis and today it is my responsibility to make my circle of influence more aware of what Microcephaly is.

So join my family in being aware of Microcephaly today, if nothing else.  One day down the road, maybe we will be more involved in research, fundraising, or awareness campaigns, but today please just be aware with us.  Remember Dylan and all of the other sweet angels with huge hearts and tiny heads in your prayers tonight.  And mark your calendar for Microcephaly Awareness Day next year, September 30th 2014...I can't wait to see what exciting and challenging changes the next 365 days brings to my life!

Dylan all dressed in Yellow for Microcephaly Awareness Day, 2013!

I will be okay.

Lately I've been thinking a lot about our future. I soon will be a card-carrying member of "The Society of Parents with Special Needs Children."  (*no...that's not really a thing...at least not that I’m aware of...).  I have no idea how to exist within this Society, and I am paralyzed by the fear of saying or doing the wrong thing out of ignorance.  I don't know how long I can politely and curiously watch a special needs child in public before I am being rude or insensitive, and I sure don't know the terminology that is considered "politically correct" these days.  I want so desperately to communicate with this new group of people that I’m suddenly linked to.  I find myself drawn to children with special needs whenever I see them.  I want to throw my arms around them, to see their precious smiles and the way their faces light up at the simple things in life.  But most of all I want to talk to their parents and hear their stories.  To know the struggles and triumphs they have had on their journey.  I want to know what their child's diagnosis is, and how different their current life is from the one their doctors told them about in the beginning. I want to learn the secret handshake in order to fit gracefully and seamlessly into their world.

But, in all honesty, I am terrified of stepping through the door and introducing myself. 

Over the past three months, I have stood on the edges so many times and tried to talk myself into starting up a conversation with a parent of a special needs child.  At the grocery store, at the zoo, at the pool, I feel like I keep coming upon opportunities to say something...and each time I silently walk away, disappointed in myself.  

Which is why, yesterday when I saw a little girl with obvious developmental delays and a very small head, I knew I had to step out of my comfort zone and speak up. 

I was standing in the membership line at OMSI when this sweet girl, who looked to be about 4 years old, came running up with a huge smile on her face.  She was immediately drawn to Dylan, who was sound asleep in my front pack, and although she didn't appear to be verbal she was pointing at him excitedly.  Next she saw Jack and ran up to give him a hug, and the woman chaperoning her kindly reminded her that she needs to keep her hands to herself.  She was so sweet, and I spent the next couple minutes saying hello and letting her peek at sleeping Dylan. 

I wanted to approach the woman with her, and to ask if maybe this little girl had microcephaly too, but I was so nervous.  The kind of heart-racing-and-butterflies nervous I remember feeling when I talked to a cute boy in high school, knowing that if I didn't come up with an opening line quickly this opportunity would pass me by.    

Finally I got up the nerve.  “Excuse me…” I said timidly to the woman with the little girl, “…but, by chance, does your daughter have Microcephaly?”

“No…..?”

Oh crap, I shouldn't have asked.  I had offended her.  I felt the blood rush to my cheeks and turned quickly to leave, muttering a quick “I’m sorry” as I tried to melt into the crowd. 

And then I heard another woman, from a few feet away.  “Excuse me...what were you asking?”  Her tone was very different from the first woman’s.  She was kind, gentle.  Looking at her, I could see the resemblance and I knew right away that this was the little girl’s mom. 

“It’s just…I was wondering what…if maybe she…it kind of looked like…” I hopelessly stumbled over my words, unable to make sense.

With a smile on her face and kindness in her eyes, she told me what her daughter’s diagnosis was, something I had never heard of. 

I pointed to Dylan.  “He was born with Microcephaly,” I said.  Out loud.  For the first time to a stranger.  My eyes filled up with tears as I quickly thanked her for her time and turned to leave. 

And then she said four words to me that I have desperately needed to hear for the past three months.  Words that meant so much coming from her, someone who has been through it and is living smack-dab in the middle of this world that I’m about to enter into.  She was just a mom, but in that moment she might as well have been the President of the “Parents of Special Needs Kids Club” for all I knew. 

“You will be okay.”

I have no idea if she realized how important those words would be to me.  She said them so confidently, with a smile on her face and a twinkle in her eye, as if she knew the amazing gift that was waiting for me on the other end.  Maybe she was thinking back to a time when her daughter was three months old.  When she was terrified of what was ahead. And when someone told her that she would be okay.  Or maybe she just knew, with a confidence that can only come from experience, that we would be okay.

I cherish those words from a stranger’s mouth.  I hope that I can continue to have a dialogue with parents of special needs children in my community.  That, through time, as I learn this secret handshake that I never dreamed I would have a need for, my encounters will be less awkward and emotional for me. And I look forward to a day in the future when I can calm the nerves of a nervous new mom by giving her the gift of reassurance that I was given yesterday. 

Because, I know it is true.  I will be okay.  

dreams

It’s a really weird thing, accepting the news that your kid is going to grow up with special needs.  I've been told many times that I’m adjusting well, handling the news so gracefully.  Maybe it's true. I don't mope around the house all day long, depressed and forlorn.  I'm not crying myself to sleep each night. I am loving every second of my new life as a mom of two boys, and watching their relationship grow.  For the most part, my life and my attitude are the same today as they were before I found out my son was born with microcephaly and a malformed brain.  

But honestly, I think the reason why it appears I'm handling the news so well is that I haven't actually accepted that its true.  When I look at Dylan, it's impossible for me to see a single thing "wrong" with him.  Yesterday he hit the three month mark, and he is doing exactly what I would expect a three month old to do.  The smiles and the "conversations" we have just melt my heart!

And yet, there are doctors and neurologists's telling us that Dylan will have all these problems.  We are in a different specialist's office just about every week, trying to find answers and determine what we can do to best help our little man out.  Each time I walk into another exam room, or talk with a new specialist, I get a huge lump in my throat as I wait for a piece of news that has the potential to tear my heart open again.  I remember when Jack was a baby, it felt like we were at his pediatrician's office so often.  Now, what I would give to only have the typical well-baby visits for Dylan, instead of specialist after specialist after specialist.  

And there is a huge part of me...the part of me that can't possibly accept the truth...that is just waiting for this whole nightmare to all be over so that I can get on with raising my kid like every other typical kid.

Moms...remember when you were pregnant and you had those crazy, hormone-induced pregnancy dreams?  Mine always had something to do with forgetting my baby as I went on with my life, or loosing him in a crowd of people.  I could hear his cry, but could never quite find him.  I would wake up sweating and shaking, terrified that one of these dreams could actually become a reality, and quickly place both hands on my swollen belly to assure myself that my baby was still safe within me.  

And then there is the nightmare of having a baby with a serious problem at birth.  Something that will affect the rest of his life, and make it that much harder for him to have a typical, happy and healthy childhood.

Right now I'm living in that nightmare, and waiting to wake up.  

As we go from doctor to doctor, I can't help but feel like we are searching for a "cure" for Dylan.  Like we're looking for the right doctor to tell us the right formula and solve this "problem" for us.  And then I can wake up.  But Dylan doesn't have a disease that can be cured.  He will never NOT have microcephaly, and from what the neurologist has told us, his brain will never have the proper structure.  We have no idea what this will mean for him or for us as a family long term, but it is something that we will eventually come to grips with.  

So, yes, I guess I'm adjusting well...as well as anyone could.  I love this little kid so much that it feels like my heart will burst.  Because of what I know about him, I am rejoicing in each and every tiny thing he does, things that I might have otherwise taken for granted.  Each time he smiles at me, I feel my eyes well up with tears of joy.  But there are hard days.  Really hard days.  Days when the nightmare feels so overwhelming that I don't feel like getting out of bed.  Days when I let myself start thinking about the future and what it could look like.  It's a lot to think about, and it makes my heart hurt so bad that I just have to stop.

And then Dylan smiles at me, and Jack throws his arms around my neck and tells me he loves me, and I realize that it's worth it.  No matter what happens, or how hard this journey is, these two boys will carry me through.  A smile from either one of them is enough to make any hard day a whole lot easier.  And it's enough to remind me that this life I am living, wide awake, with the two of them snuggled up on my lap, is my every dream come true.