Courage, Strength and LOTS of Tears

Let's be honest here people, I am a crier.  I cry when I am happy, sad, inspired, angry and other times I cry just to cry.  I cry watching movies, I cry when I read books and I have even cried reading a Hallmark card.  So yesterday, while not completely surprising, I cried.  But these tears were different.  They were angry tears.  They were frustrated tears.  They were tears of complete helplessness.  You see, yesterday I spent the better part of the day at Children's Hospital in Fresno with my dear friend Crystal and her amazing 4 year old daughter Gwen.  Gwen, like me, has Chiari and she hasn't had the easiest road with it.  Her story started out when she was only months old.  She started having seizures and by the age of 2 had developed other symptoms.  So in May of last year, they operated on her tiny little head.  Although brain surgery is always traumatic, sweet little Gwen had some complications that landed her in the hospital for weeks at a time.  Very traumatic stuff for such a tiny little girl.  But she is a fighter like her Mama.  She recovered and is doing pretty well despite the odds.  A few days ago, while talking on the phone to Crystal I heard Gwen scream.  My heart sunk because I knew something was wrong.  Turns out she fell backwards and bonked her head.  For any other child it might not be a big deal.  But for Gwen, any bonk to the head is dangerous and very scary.  Turns out she has developed a small CSF (Cerebral Spinal Fluid) leak and if it does not heal on it's own, she will need to have her dura matter repaired. 

The entire day I watched helplessly while Crystal did her best to stay strong.  I watched as she walked out of the back after handing her daughter over to doctors to run test.  The fear she must have had in her heart is almost unimaginable.  We got some coffee and tried to stay busy.  But I could see the fear in her eyes, the terror she must have felt.  When Gwen awoke from the round of MRI's, she was not happy.  In fact, she was down right pissed.  And who can blame her?  She was screaming and thrashing around.  Crystal did everything she could do to try to calm her down, all the while being terrified that she might hit her head on the bars of the bed.  No parent should ever have to endure such hardship.  I thought my brain surgery was scary.  It was truly a walk in the park compared to what Crystal deals with on a daily basis.  So I just tried to comfort Crystal when I could and desperately try to hide my own tears.  We then met with the Neurosurgeon who said he would like to wait a few weeks to see if the dura will heal on it's own.  Given Gwen's previous post op issues he would like to hold off surgery as long as possible.

I cried the whole way home.  I cried for Crystal.  She wasn't given a fix.  She wasn't given any real answers.  All she can do is sit and wait.  Hope and pray that her little girl's body will repair the tear.  I cried for Gwen.  She is truly a fighter but she is so young.  This is what their lives are like now.  Everyday filled with uncertainty.  Everyday hoping Gwen doesn't fall or get hit in the head.  Brad, Gwen's Dad, has by far one of the quickest reflex's I have ever seen.  A few weeks ago, Gwen lost her footing and I saw Brad catch her before I even realized what was happening.  But for him, it is probably more out of fear than just normal reflex's.  They are probably in constant emergency mode.  This is their life.  Chiari has stolen a little girl's peace.  It has stolen their families ability to breathe.  And it just isn't fair. 

I talk about Chiari a lot.  It isn't because I want people to feel sorry for me.  I am OK.  But it is because so many people I love have it.  The Chiari Community is like a family.  We lean on each other.  We understand each other.  We support each other.  But I talk about it mostly for the Chiari Kids.  The little ones who suffer.  For their parents, who have to stay strong through the fear. 

Yesterday was rough for me.  But I got to go home.  I got to go home to my family.  I got to go home and work on the plans for our wedding.  I got to snuggle my kids and not worry about their health.  So many of my friends, like Crystal, don't get a break.  This is their life, everyday.  Even as I type this I know of at least one Pediatric Chiarian who is having surgery today.  So my tears come out of frustration.  I want a cure.  I want these sweet little babies cured so they can live their lives and so their parents can breathe.

So yes, I talk about it a lot.  But in my frustration comes my blessings.  I would give up my friendship with Crystal in a heartbeat if it meant Gwen never had Chiari.  But because of Chiari, I have them.  And because of Chiari, Crystal has become one of my best friends.  She will be standing up there with me in June when Jason and I get married as one of my bridesmaids.  We are also planning our first major fundraising event in September.  So even in this, there is blessings.  I am blessed to know their family.  To share in their joys and even in some of their sadness.  They are an inspiration to me.  They are the reason I am so passionate about Chiari.  The reason I will shout about Chiari everyday that I live. 

If you want to meet a real hero, come meet their family.  They are full of courage and strength.  And even in the tears, they are true hero's.