A Melancholy Anniversary-Dravet Syndrome Foundation

I'm a positive thinker.  One of those people who is able to share a tragic story with a sympathetic smile on my face.  It's not that I'm being fake, it's that sadness is an emotion I've been uncomfortable with for most of my life.  I'd like to think that most people don't like to be sad.  I'm like Claire, the mom on Modern Family, who smiles when giving bad news because she's too worried about how her son will accept the news to focus on how sad she really feels.  However, I've accepted that I don't like to be sad, but learned to experience how deep it can run when sad things happen. I've learned to feel sad and accept it.  To understand how so quickly on tear can turn into a downpour and then feel like a never ending tsunami.  But then once that storm has cleared I'm able to take a deep breath and see the sunshine peek through and the waters still. 

So I know I haven't always displayed or talked about our struggles with Finn's condition, but I keep that pain close to my heart.  I guard it carefully.  I don't mean to make it sound like it's always this painful revelation when looking at him, but there are definitely moments of dark sadness that we as a family, and alone, have to walk through.  We are so grateful for the close family and friends that have chosen to help us carry this burden when it is just too much for us alone.  Our hearts break just watching them experience the pain of seeing a seizure, either for the first time or the 100th.  We can't count how many heartfelt prayers have been said for our little boy, and how much it has positively impacted our outlook on his condition.  Hearing that our friends kids are learning about God's power, strength, and healing because they are learning to pray for Finn is humbling to say the least.  To know that Finn's story and ours is impacting God's kingdom for the better is an amazing feeling.

I'm learning to understand and sympathize with what people mean when they say someone in their family has an "invisible disease/disability".  It's when you "look" completely normal and people don't understand when you or a loved one acts in a way that doesn't match their outward appearance.  Finn looks like every other little boy, but he can't comprehend danger or social situations like other little boys.  We often get looks of disbelief at parks when Finn runs out in front of another child on the swings or when he pushes another child out of the way to get to the slide or when he just lines up rocks on the sidewalk.  He just doesn't understand the environmental danger of the world or socially acceptable standards that others may take for granted.  I often feel like the parent that is just having to explain over and over again that I'm not a bad parent, and Finn's not an unruly kid.  I know I'm not alone in feeling this way, whether your kids are disabled or average.  I just wish we lived in a world of more compassion and understanding.  It sure would make being a mom a whole lot easier.  But Finn is truly amazing.  His smile lights up a room and his man giggle is so contagious it has you laughing along in seconds no matter what mood you are feeling.

As a parent, I try my hardest to teach and love Finn in a way that he will understand.  I want him to grow knowing that all those around him are his supporters.  I want a cure.  Don't get me wrong, I don't want to change Finn, I want to take away the pain and suffering that he encounters on an almost weekly basis.  Both Patrick and I have changed in ways that are irreversible.  I have more of an understanding of sympathy and caring for others because of Finn.  I want people to be able to look at us and see God's goodness, to know that even in really hard and trying situations that God's the one helping us through it.

I don't want to erase all the things I have learned as his mom, but I wish he didn't have to suffer.  I know every parent wishes they could protect their kids from suffering.  I realize through my own trials that those are the situations that are molding me into a stronger and better person.  I'm definitely a better wife, friend, mother, daughter and sister because of Finn, and I wouldn't change that for anything.  I've learned the importance of a much needed hug and a friend that will just sit and cry with you when you need to not feel so alone.  I've also learned how quickly my tears can turn to a smile seeing our compassionate daughter care and love for her big brother who's sick.  I've also learned to cherish milestones with excitement that can hardly be contained.  There is always good, I truly believe that, you just have to have your eyes and heart open to see it.

The thing is, Dravet Syndrome isn't just affecting our family, it's affecting yours.  I hope it's affecting it in a positive way, by showing you ways you can care for others or ways you can empathize that you never thought you'd encounter.  Just by being our friend and walking along side us through the roller coaster that is life you are affected by Dravet Syndrome.  Here's a link to find out more if you'd like.....http://www.dravetfoundation.org/ This post is being posted this week of all weeks because it is the 4th anniversary or Finn's first grandmal seizure (July 15, 2008).  The day that changed our lives and the way we look at the world.  

I hope that you will consider joining us in supporting the Dravet Syndrome Foundation on October 20, 2012 in Arnold, Missouri.  Participation in the walk/run or a donation of any amount would mean so much to us, we have a modest goal, but we'd love to blow it out of the water.  We realize many of our extended family of friends don't live in Missouri, so even if you aren't able to join us, you can keep supporting Finn by praying for him and for a cure for all those with Dravet Syndrome.  Please visit the walk website (our team for the walk/run is Team Finn) http://www.kintera.org/faf/home/default.asp?ievent=1019220.  Thank you for all the love and support you show to us daily, we are SO LUCKY to have the countless friends and family that surround us.