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.

Bucket Lists

So many people talk about their "Bucket Lists".  If you don't know what that is, it's a list a person compiles of things they hope to accomplish before they die.  It seems like such a great idea.  Your list can be grand or simple.  It is truly up to the owner of the list.  It can include trips to exotic destinations or purchasing a new home.  Or maybe it is a goal to finish a project or degree.  The possibilities are endless and no two lists are ever the same.  And you can tell a lot about someone based on their list.  Their passions come out, hobbies are discovered and dreams seem possible.  Compiling a list is like having your very own fantasy come true.  You can add anything you can dream up.  All in the hopes that you can check an item off your Bucket List! 

Pre-Chiari I loved my list.  I shared it with no one.  It was my own personal list that I held close.  It only had a few items on it.  Mostly things like traveling somewhere I had never been (yes I know the location and no I am not sharing, this one is still all mine), jumping out of an airplane, doing missionary work somewhere remote and writing a book.  Pretty simple list.  Nothing super creative and nothing exotic.  Oh my, how things change.

Over the last 2 years that list has changed.  Dramatically.  I still of course would love to do those things but they don't hold the same value that they used to.  When you face a life-threatening situation, that you have to wait several weeks to face, it gives you a whole new perspective on life.  What you once held dear becomes trivial.  The big dreams you thought would make you happy now seem unfulfilling.  In the end it changes you down to your core.  During the weeks that led up to my surgery I was terrified.  To put it mildly, I was a wreck.  On the outside, I was optimistic and confident.  On the inside, I was lost and hopeless.  I tried desperately to hide the fear so that I did not appear weak.  I also considered the fact that if I did not survive, what would people remember?  I did not want them to remember a broken woman.  So I kept it all inside.  That is until someone came along and pushed his way right in, that is another amazing story in itself.  But I did survive.  If fact, I am doing remarkable given the circumstances.  However, it did change my Bucket List and let's be honest, it changed my entire perspective on life in general.

My new Bucket List is still mine.  There are things on there I may never get to do. but I am ok with that.  I believe that you have to dream big or you will never truly reach your potential.  Some of the things I will share over time with people in my life.  But I am going to share one now.  Since my diagnosis a few years ago, I wanted to be a light in the darkness of the condition.  I wanted to be a positive story that people could find.  When most people are diagnosed they Google the condition.  And what they find is so overwhelmingly negative.  I know there are positives out there.  So I wanted to be another positive for them to find.  I want to raise awareness and bring hope to people who are suffering.  It looks like I might get my chance.  A dear friend of mine, who's young daughter has Chiari, suggested we do a fundraiser right here in the Valley.  I am thrilled at the possibility of hosting a Conquer Chiari Walk Across America in September here in Fresno.  We have to finish some paperwork, but with fingers crossed, we are hoping we will be accepted.  It is hard not to get your hopes up, since there is always a chance it will be declined, but I know we could do great things for the Chiari Community. 

So if you are reading this and want to help, let me know!  My dream since my diagnosis has been to bring hope to my friends.  Sometimes, in the middle of the pain and the suffering, hope is all we have.  So please keep your fingers crossed.  I will update when we get word but for now, I am secretly jumping for joy at the possibility of crossing off one of the top items on my Bucket List!!!

My scar is no longer a sign of weakness.  It is a reminder of what will not stop me.

"The War" is NOT over....

After reading a status update from a friend on fb I got to thinking.  And that thinking led to some anger.  Now that anger is leading to this blog....

Let me explain.  My friend Everett posted about all the excitement over the war being over.  But he wasn't celebrating like so many are.  He was being realistic.  And I loved his honesty.  Yes, the war is over.  Or at least that is what they say.  I don't want to get into any politics so I will leave it at that.  But here are some truths.

Yes, many military service members are coming home.  But it is far from over.  Unless you have seen the trauma that can come from returning home from war you might think it is over.  You can turn off the TV and go about your safe, happy life.  Thankful that so many have returned.  But what you might not know is that for many who have served, the war is only begining. 

What about the wounded?  The thousands of service members who now have to face years of rehabilition.  The ones who have lost limbs because of this war.  The ones who have physical scars that may never go away.  What about them?  Who is fighting for them?  They served this country, and many are not getting the care or support they deserve from society.

What about the ones who don't come home?  Their families?  Yes, war is over.  But their lives will never be the same.  They have to live their lives with an ache in their hearts that they shouldn't have to have.  Are you fighting for them?  Are you helping them?  Yes, we can all clap that we are moving on from this war but what about them?

And finally what about the ones who come home with the scars you cannot see.  PTSD is a real condition.  It is a real live issue and it is claiming the lives our our service members.  Families everywhere are mourning for the service members who come home a shell of who they once were.  And what is worse is that the suicide rates are climbing.  Society is failing these families.  Where is their support?  Where is the support for their families.  They are not taught any coping skills.  They have no clue how to help their loved ones when they come home.  They are left to feel helpless and alone.  What are we doing as a country to help these people?

We owe these service members and their families so much more.  If you are a woman and you are educated and have a job, thank a veteran, so many woman are not even allowed to go to school.  If you tucked your kids in and didn't have to worry about a bomb hitting your house, thank a veteran.  I could go on and on with examples but you get my point.  They need our help.  So instead of celebrating the war (and don't get me wrong, I am glad they are coming home) being over how about you dedicate your time or your money to helping these people?  Helping their families? 

Christmas is this weekend.  How many of these families are celebrating without a loved one?  Maybe it is time for us "civilians" to fight for them.  To stand up and say we are here to support the men and women who defend our freedoms.  So pick an organization.  Give one less present to someone and instead donate it to any one of the organizations out there.

***End Rant**

Forgiveness...

What a crazy and almost daunting word.  Forgiveness.  We all know what it means.  We all know we are supposed to try.  But what happens when years later you still cannot?  No matter how hard you try, no matter how much you want to, you just can't.  When your heart hurts, it affects everything you do.  It affects the way you look at things.  It can harden your heart.  It can take a normally rational person and bring out the crazy in them. 

Most people have been there.  That time that so and so left you alone when you needed them the most.  The time that jerk-off A made you cry.  That time the friend treated you as if you never mattered.  Let's be honest.  If we were to make a list of the people who have hurt us in the past, that list could be devastating.  Nobody wants to be reminded of those moments.  But they are there.  They have a way of sneaking up on you just when you thought you had forgotten.  And sometimes, if the hurt is big enough, it kicks you in the gut without warning.  I have had those moments more than normal lately.  Maybe it is the fast approaching New Year that makes me reminisce about old times?  Maybe it is the fact that no matter how hard I try, there are some things I just cannot forget.  But the reality is that every time I feel that stab in my gut, it makes me fearful.  Fearful of the future.  Fearful of the realization that no matter how hard I try, I will be hurt again, in someway. 

But I don't want to be that person.  I don't want to be that person that is so caught up in myself that I forget to realize that the people who have hurt me, are only human.  They come with their own hurt and their own baggage.  That nobody is perfect.  Mistakes are made.  We cannot always stop them.  So why do we live our lives trying to make others pay for ways they might have wronged us?  Is it because we are too ashamed to admit that we too have failed before.  We too have let someone down.  What if our wrongs were shown on a list to us?  My guess is that most of us would be ashamed of it in someway, I know I would.

So I am going to try harder.  I am going to try to remember that the people that have hurt me are only human.  I am sure many of them never meant to.  I think it is just a part of life.  And the more I think about it the more I am grateful.  Because in those moments there are always blessings.  Honestly, the more you love someone the more power they have to hurt you.  So I am grateful for the love that I had for them.  I wouldn't trade the pain away to forget I knew them.  I wouldn't trade the pain that I felt for the chance to have it never happen.  Everything, good and bad, that has happened in my life has lead me to where I am now.  And ups and downs and everything in between, where I am now is a beautiful thing.  Even in my crappy moments, life is a beautiful thing. 

People change.  I have seen firsthand the healing power of love and compassion.  I have seen people rise to the occasion even when everyone thought they would fail.  My heart aches for those who never get the chance to change.  Life is too short to hold grudges.  Life is too short to keep track of others mistakes.  Life is to short to try to sit on a pedestal and keep others down.  I have been guilty of that too.  Of that nasty little habit of keeping score or pointing the finger at someone else for their mistakes.  I have to let that go.  I have to learn how to turn that anger into something positive. 

I am sure that I will be hurt again in my life.  I love far too many people to think that there won't be times that it won't happen again.  But you know what?  That is ok.  Because the truth is, no matter what, I can only control my actions.  I cannot control what others do or say.  The only thing I can do is live my life with enough love and compassion that hopefully if I do get hurt, I will have enough of the good things in life to get me through. 

Thank You Mr. Clooney

Every so often life reminds me of how lucky I am. Today, I read an article about George Clooney and his experience with Chiari. And while he has yet to actually say what he was diagnosed with, many people believe it is Chiari. In the article he discusses the injury on a movie set that led to his decompression surgery. But what touched my heart is when he admits that he considered suicide. He admits that the pain he was in and the fear that he had, clouded his judgment so deeply that suicide was an option. For such a successful man to be able to admit that publicly is an inspiration. Now 6 years later he still struggles with the condition but he didn’t give up. I know all too well how he feels….

My Dark Place:
The weeks leading up to my surgery were nothing short of pure terror. There were days that no matter how many people loved and supported me, I felt completely alone. I can honestly not even begin to count the number of nights I spent crying alone on the bathroom floor as my children slept. Praying for help but refusing to let anyone help me. I was so blessed to have a great support system but I would not let them in. The truth is, during those moments, I too wondered if it would be easier to just slip away. The fear of the surgery is something no words can do justice. Surprisingly the fear of death wasn’t always the hardest part. Of course the thought of not being there to raise my beautiful children was traumatic. But in all honesty I was afraid of surviving. Many Chiarians suffer through multiple surgeries with no clear improvement in life. Some are confined to wheelchairs and unable to take care of themselves. Some suffer so deeply that they cannot ever go back to the person they were. The fear of becoming a burden on my friends and family was terrifying.

Blessing in a Storm:
Two weeks before my surgery I received a blessing. My children were with their Dad for the weekend and I of course had no DL. I longed to go to the beach and just relax. Out of nowhere and in a conversation with someone I barely knew, he offered to take me. He knew a little bit about what was going on and said I should have the chance to go to the beach one last time before my surgery. It was in all honesty one of the most amazing days I have ever had. We traveled up the California coast and it was breathtaking. The next night however was breathtaking in a different way. That night, as I was tucking Kylie in, I experienced another panic attack. I ran to the bathroom, turned on the shower and completely lost it. Several times during that moment I considered “other” options. It brings tears to actually admit that. The fear and pain that I felt were so overwhelming. Then, well after 9 PM, after a good hour or so of continuous sobbing, and after praying for a sign that things would be ok, my phone beeped. It was a text message. All it said was, “Hey Amy, you ok?”. It was from Jason and for the first time since finding out I needed surgery, I admitted that I was not ok. He quickly arrived at my house and sat on the floor next to my couch as I cried for hours. We watched a movie and before I knew it, I woke up on the couch and he was gone. He continued doing that every night until my surgery. Never once asking for anything, just spending every free moment he had making sure I was ok. He never once left my side. A few days before the surgery I introduced him to Niko and Kylie and he asked them if he could take us all to the beach. It was truly an amazing day. He was there when I was wheeled out of ICU at Stanford and again never left my side. He nursed me back to heath, took care of the kids and the house and made sure that I was given every med that was prescribed. He had no idea of how the surgery
would turn out. Whether I would suffer permanent brain damage or not. He was almost a stranger who stepped up when I needed it the most. The road to recovery was not easy. But it was blessed. Now when I look back at that night on the bathroom floor all I can do is smile. In my most desperate moment, when I felt like the world was crashing down on me and when I considered an option that would have left my children without a Mother, I found hope in a text message and a man I barely knew but would grow to love.

Today, while reading that article I cried. I understood, all too well, what Mr. Clooney was feeling. I understood the fears he faced and the pain that he suffered. I have experienced the depression that comes with being diagnosed with a condition that has no cure. But I survived. Some do not. If I could, I would thank Mr. Clooney for his honesty. For allowing his weakness to show. It inspires me to do the same. To hopefully serve as another voice of encouragement in the storm that is Chiari. We may not have a cure, but as long as I am alive, I will continue to raise awareness. Not just about Chiari to people who might not know what it is, but to raise awareness to those with Chiari. Those who are suffering. To stand up and say, that yes, I have suffered deeply. I have felt so low that death seemed like a viable option. But I am still here. I am still fighting and no matter what, I will not give up. And if you are reading this and need that encouragement, I am here for you. You are not alone.

Contentment....

I love to read.  It is one of my most favorite ways to relax.  There is something about reading a book while curled up on the couch with a blankie and some wine that soothes my soul.  Now, what I am about to tell you is that something that does not leave this blog.  It is a secret that I am not proud of.  Raise your right hand, and swear that you will not repeat what you are about to read.  When you are done you may continue on.  If you did not please go back to facebook and deal with the annoying new layout that has set the nation on it's head and into pure chaos.  ;-)

Ok here it is...I LOVE to read the most horrible and ridiculous romance novels.  There I said it, I've admitted it.  Give me a sappy Nora Roberts novel and some wine and my night is set.  Not sure what it is about them but I love them.  They are like an escape from reality.  And I always know what's going to happen.  Strong, stubborn girl in trouble, handsome stranger who saves her and they all live happily ever after.  I have loved reading them for years.  Even though I can pretty much tell you what is going to happen after the first chapter, I can't help but soak them up.  And now that I have a Kindle my collection of romance novels are becoming quite impressive, yet embarrassing. 

But this past week, while driving in my car I heard a song that touched my heart, "Courageous" by Casting Crowns.  If you haven't heard it find it and listen.  Now, Casting Crowns is by far one of my most favorite bands.  Their songs are powerful and always pull at my heart strings in one way or another.  Turns out there is a new movie of the same name coming out next weekend.  The part of the song that pulled at me was the line that said something about loving our children and refusing to let them fall.  Wow.  That verse shook me to my core.  So after reading about the movie, I found out that there were two books out that are based on the movie, "The Resolution", one for women and one for men.  After a few times of hearing the song I decided I needed to read the book.  Not my typical reading material but I figured it was worth a shot.

I started the book yesterday and I am hooked.  In the beginning the author warns that the book is not for those who are just looking for leisurely reading or a book to just rush through and boy she was right.  This book is broken down into a list of "Resolutions" and you are encouraged to just read one chapter at a time and spend a day just thinking about what you have read. 

The first chapter is about being content.  Which in theory, sounds easy enough.  But what an eye opener this first chapter has been for me.  The author discusses finding contentment in everything you do.  That far too often we rush through life trying to get to the next "thing" or stage in our life.  She discusses how when our children are newborns, we can't wait for them to sleep through the night.  Then as they get older we can't wait for them to walk and so on.  She points out that far too often we forget to just enjoy them as they are, after all, they will only ever be a newborn one time.  They will only be toddlers for just that one time.  We will never get that time back.  Then she smacks the reader with the fact that instead of rushing to get to the next stage we need to step back and enjoy the moment.  I can remember feeling exhausted when Niko and Kylie were newborns.  The late night feedings seemed to never end and I couldn't wait for the nights that I could sleep through the night.  But now, my heart aches slightly at the fact that I won't get those back.  The way my children would look at me as I fed them and the snuggles that followed.  Why was I so impatient for them to grow?  If I am honest, it is because I wasn't content.  I did not make the conscience effort to be content with those moments.  And that truth makes me cringe.  What have I missed in my life because I was rushing to get to the next thing?  How many moments will I never get back because I was too focused on the future? 

So I am starting today.  I will think about my future but I will focus my energy on the now.  I will try to find contentment in where I am (and where my children are) now.  I am pretty sure it will not always be easy but I am up for the challenge.  I don't want to look back and wonder what I have missed.  But most importantly, I want to be an example for my kids.  I want to show them what contentment is.  That it is a conscience effort to be grateful for what you have in life and not focused on what others have.  To be happy with who you are while still continuing to grow. 

I am not sure what the rest of the book holds.  But I do know that so far I like where it has taken me.  While nobody likes to be reminded of their shortcomings, I am glad this book is showing me mine. 

Big Brains Unite!

Chiari is part of my life now, this I know.  There are days that I except it and days I do not.  But yesterday I was proud of it.  The Conquer Chiari Walk Across America was an event to help raise awareness and money for Chiari.  I knew this when I went.  I understood what it was before I got there.  What I didn't expect was the rush of other feelings I felt while there.

Pride.  How in the world could I feel proud to have a condition that not only required brain surgery, but comes with the knowledge that I am always at risk of needed it again?  Well I was proud.  I walked that walk with purple beads that signified that I had Chiari and I was proud. 

Belonging.  I have been blessed with some of the most supportive people on this planet.  My life is full of love and happiness but since I was diagnosed I have always felt a little out of place.  Sometimes it is so hard to talk about having Chiari.  I know there are people out there that are sick of hearing about it.  That think I am whining or blowing it out of proportion.  But sometimes it is all I can think about.  But yesterday, everyone I saw with purple beads, knew exactly how I feel.  They have felt the fears and the sadness.  They have had to mourn for the life they used to have and the one that they will never get back.  They have felt the roller coaster of emotions that comes with the weeks of recovery.  One smile from someone who had the purple beads, and I felt peace.  It was an amazing experience.  Side note: About halfway through the walk I almost turned around and walked the opposite direction.  I am used to being unique.  The walk was full of people with Chiari...I could only handle being "normal" for so long.  So of course walking backwards was my only option at that point.

Love.  My crew was amazing.  They drove from all over to be there for me.  They rocked my awesome shirts and supported me.  What an amazing feeling that was.  I am so thankful to each and everyone of them.

And finally hope.  For me, the most difficult part of having Chiari is the hopelessness that I sometimes feel.  Even in my happiest moments there is a cloud.  A cloud of fear and uncertainty.  A fear that one day I could lose it all.  One of the things that my doctor told me about the surgery is that most patients experience periods of relative stability.  Let me translate: "You will have this suckish and painful surgery and fingers crossed feel somewhat better for a period of time, not the rest of your life, but hopefully a while".  So while most days I am thankful to be doing as well as I am, some days are just hard.  I want to enjoy my life, but sometimes I am afraid to get too comfortable.  I have plenty of friends who have needed multiple surgeries and it terrifies me.  But yesterday, I felt hope.  To be in the company of people who are so strong is a life changing experience.  We walked together, united in our fight to find a cure.  Determined to fight for those who we have lost and desperate to find a cure so that we do not lose anymore.  I have heard that there is strength in numbers and I felt it first hand yesterday.  We made a difference.  We raised money and raised awareness.  While I have wished at times that I had never heard the word Chiari, yesterday I felt hope.  The purple ribbon that ties us together is the same ribbon that will give us hope.  As long as we have each other there will always be hope.