Confessions of a Ninja Mom Week 1

This week, I am challenging myself to really look at my day and find one thing to be thankful for.  But I can't go for the obvious answers.  I have to really dig deep and find something I might not normally see.  I already feel so blessed.  I look at my life and while I do not have everything I could ever want, I truly have everything I will ever need.  My hope is to find the hidden things in life that I might overlook. 

Monday:  Today I am thankful for spiders.  Ok, well not really thankful for them, but thankful for their ability to turn a boring drive into a Ninja inspired death match.  Picture if you will, my happy self cruising down the street singing along to the radio when out of nowhere, this monster of a spider, he was at least 3 feet long, attacks me.  I did not provoke said monster spider, I didn't even know he existed!  But out of nowhere he jumped on me threatening my very life!  Good thing I have the reflexes of a cat and Ninja chopped him off my arm and onto the floor.  Now, by quick reflexes, I mean screaming at the top of my lungs and flailing around like monkey til he falls off my arm.  I am pretty sure he flew under my seat hysterically laughing at my response.  But my life was hanging in the balance and acting like a crazy person was clearly my only hope for survival.  Like I said, not as much thankful for spiders as much as the adventure they bring.

Tuesday:  Today I am thankful for text messaging.  Dear hubby got some really good news, and delivered it to me via text message because I was in a meeting.  Good thing the guy I was in a meeting with understood me well enough to not question my immediate fist pumping and tears.  Seriously, think of life before text messaging.  We used to actually "talk" to people.  So weird.  Wonder if cave people actually wrote on the walls to avoid "talking" to each other?  I wonder what, "You my date, we eat food, I club you" looks like written in caveman on walls?  Wonder if they ever wrote: #YOLO?  Hhhmmm maybe text messaging isn't the best thing to be thankful for, but today it was super awesome.

Wednesday:  Today I am thankful for zippers.  Not really sure why, but this morning when I put on my pants I thought, "hmmpf, zippers are pretty cool".

Thursday:  Well today was Thanksgiving.  Of course I am thankful for my husband and my kids.  My family and friends.  And of course for my job and a roof over my head.  But today Jason and I spent Thanksgiving at our Pastor's parents house.  What an amazing family they have.  His parents have been married for nearly 50 years and each of their 3 sons are still married to their first wives and have a bunch of kids.  The kids all played outside, no TV and no video games.  The adults sat around talking, laughing and just truly enjoying each others company.  I am thankful to be in a place where the simple life truly warms my heart.  No need for pomp and circumstance, just good old fashioned family values.  I was truly honored to be invited to be a part of it.  Bonus thankful item: LaLaLoopsy Dolls.  They are just fun to say.  Say it 5 times and tell me you aren't smiling!

Friday:  Today I am thankful for fuzzy socks.  My sock drawer looks like a rainbow exploded in it.  Today while in Walmart, the line was super long even though I went in the afternoon.  Turns out there are quite a few people like me who chose not to act like a crazy person and shop at 2 AM.  While in line, dealing with grumps all around me, I lifted up my pant leg and peeked at my socks.  I giggle every single time.  I can't help it.  And today, I chose to wear two different fuzzy socks which made me giggle just a little more.  The person behind me took a step back.  I think my awkward sock giggle made him nervous.  Whatever super boring, grumpy man.  Take your stupid white socks and step away from the cool club.  We didn't want you in our club anyways.  And of course by "we" I mean "me", which makes it super exclusive.

So what did I learn in this little challenge?  First, I learned that once I realized how thankful I am for zippers, every time I put pants on, I giggled.  Seriously, zippers now make me giggle.  Next time you zip up your pants, try not to giggle.  But in all honesty I learned that I have a ton to be thankful for.  From coffee to cream cheese to gas in my car, I am a pretty lucky lady.  I may not have a ton of money or the fancy new car but my life rocks.  I got a roof over my head, a hubby that loves me, kids that make me laugh and zippers on my pants.  What more can a girl ask for?  Oh and I also learned that I giggle far more than the average person.  But that's ok, life is too short to take everything so seriously! 

I challenge anyone to try and take a week to really look at the things you are thankful for each and everyday.  Go beyond the obvious answers and really think about it.  It is amazing what it does for your spirit.  I might try this technique on the days where I am not so happy.  I bet it will help snap me out of it.  There is truth that your eyes are the gate to your mind.  What you see through your "eye gates" can truly affect your mind.  This week I chose to see the blessings and I hope you will take some time to see yours too!   

Next Week's Challenge: Do one silly thing with my kids before bed.

After all, being silly is the best medicine!

Confessions of a Ninja Mom...or at least her attempts to be one....

It's been too long.  Life seems to get in the way of my writing, which is also my therapy.  This could explain the increase of craziness in my head.  Writing gets the crazy out to, of course, add more crazy.  So why the new direction?  Chiari is a part of my life.  I have said this many times even though I don't always accept it.  But I don't want it to define me.  I don't want to just be the girl with the big brain, although I guess worse could be said about a person...lol.  Lately, my heart has been heavy with thoughts of a hobby.  Not sure what that means, maybe my heart was just telling me I needed a release.  I pondered many things, photography, sewing, scrap booking, restoring old furniture, but none of those by themselves stuck out.  So I decided to analyze my passions.  Three things came to mind.  My relationship with God, my relationship with my husband and all our kids and my love of writing.  Then it hit me.  What if I challenge every week with something new and write a collection of essays?  What if I take those essays and make a book out of it?  I have secretly wanted to write a book for as long as I can remember and I think many would agree that I have a unique view on life.  I am after all a self proclaimed Ninja and Ninja's love to write books! 

Many insecurities come to mind.  First, will anyone read it?  Honestly, I don't know.  But really this challenge is for me and my family.  This challenge is about making me a better wife, mother, friend and person.  Next, what if I don't stick with it and I lose interest?  I am the big idea person.  My motto has always been "Go Big or Go HOME!".  Well, if I GO BIG, and it flops, at least I tried.  And finally, what if after all of this I do not become a better me at all?  Which that statement doesn't really mesh if I think about it.  If I am aspiring to become a better person all around, aren't I already growing? 

I can't promise it will be all fun and games.  Although if I am involved, the chances are pretty high that there will be quite a few fun and games and most likely a whole lot of humor.  But I can promise that I will be honest.  I am going into this with an open heart and an open mind.  If I am truly going to push myself to becoming the person I aspire to be, then I am going to have some growing pains along the way.  So I will be brutally honest with myself and this challenge.  Life gets busy, so while I may not write every single week, I will focus on a new challenge each week.  And let's be honest, some may just be so downright boring that I won't have anything interesting to write about. 

So here I go.  This week, given the holiday week, my challenge will be to find one thing each day that I am thankful for.  But not the everyday answers like, "I am thankful for my family" stuff.  Something completely overlooked on my average day.  Something that makes me have to really search to find.  Something that will give me a little more appreciation for all that I have.  Something like a stapler!  Seriously, where would civilization be without staplers?  Mutant robot paper clips may have taken over the world.  We would be at the mercy of paper clips everywhere.  Oh the horror!  See, like I said in the beginning, out with the crazy....

Conquer Chiari Walk Across America Fresno CA!

Please visit https://www.conquerchiari.org/ccwaa12/AmyValentino to register as a walker or to donate to the team!

Thank you from the bottom of my heart to the top of my big ol brain!!!

Blessings and Brain Fog

Yesterday started out with the rare but dreaded "Brain Fog".  Laying in bed in the morning, I could feel it rolling in.  If you do not understand what Brain Fog is like, let me explain.  Imagine, for a second, taking a hose, attaching it to your head and filling it with water.  As you fill it up, your head gets heavy.  Things seem to slow down and move in slow motion.  It isn't so much pain as much as it is annoying.  It feels as though you have a pumpkin on your head, like you are one giant bobble head.  Or at least for me, that is what it is like.

I have been here before.  It is rare, but it usually comes after days where I may have pushed it too far.  And Saturday I had an event, so it is safe to say, I pushed it.  Truth is, I wouldn't have it any other way.  I refuse to slow down anymore than I have to.  And trust me, there are times where my body forces me to slow down.  Most people don't understand.  It is easy to say, "Amy, slow down" or "Amy, it's not worth it".  But not when you are the one living with it.  I accept that my life will never be the same.  I agree that there are things I cannot do.  Running another Mud Run is out.  White Water Rafting is out.  And, against my will, doing my own stunts as a ninja is definitely out.  But everyday things like work, are not out.  In fact, they are what keep me going.  I have to keep pushing through.  I like pushing myself.  As long as I am pushing myself, I am proving that I haven't given up.

But there are times where I have to listen to my body.  And days like yesterday serve as a reminder.  Pushing myself can be rewarding.  I am able to do things I wasn't able to do 2 years ago.  I have come a long way in my recovery.  Most days I am doing great.  Yesterday morning, I was not.  So I took it easy.  I moved slowly and tried to relax.  I tried not to focus on what I couldn't do and more on what I could do.  I did have a moment of tears.  I was frustrated but Jason quickly reminded me that I was alive and able to have our morning coffee together and that is a huge blessing.  He always knows exactly what to say to me to help ease my frustrations and put things into perspective.  And after some meds and relaxing, I was up and at em! 

Now here are my blessings.  Jason and Niko decided they needed some "Dude Time" so they hit he golf course.  Kylie and I decided that with the boys gone we were going to shop.  We were shopping for decor for Jason and I's upcoming wedding when it hit me.  As Kylie and I were rocking out to her Big Time Rush CD, belting out one of the songs I realized I was happy.  Not just "having a good time happy" but down to my soul happy.  The blessing in living with Chiari is that the little things like belting out boy band songs with your daughter mean the world to you.  Every thing you can do, matters.  The blessing in living with Chiari is that you appreciate each and every good moment much more.  So yesterday, was one of the best days I have had in awhile.  And it all started out with a morning filled with pain.  But because of that pain, I was able to appreciate the rest of the day so much more.  I might have missed the beauty in an ordinary day had it not been for Chiari.  And for that, I am blessed and grateful to have Chiari.
My question to you is simple.  What are you missing?  What did you take for granted today?  My guess is that there were little things you may have missed.  I am guilty of that too at times.  But when you are faced with a condition that has no cure you can either allow it to bring you down or you can use it to see the beauty in all the areas of your life.

So to my Chiari friends who are in pain, know this.  I understand your pain.  I understand your frustrations and your fears.  My heart aches for those of you who suffer daily.  You are not alone.  We are in this together.  I will keep searching for the "Little Wins" in my life so that I can keep fighting for a cure.  I hope in some way, today you will find a handful of "Little Wins".  Because if you stop looking for them, Chiari will always win.  Chairi may win at times, but it will never break my spirit.  And I hope it never breaks yours. 

Pre-Surgery Babble

Writing is my release, I love to do it.  Sometimes I write long blogs and they don't even get posted.  Sometimes the thoughts in my head move so quickly that writing them down is the only way for me to communicate what I am thinking.  So I am copying some of my old notes.  They were notes I wrote prior to my surgery.  Notes that never made it to this blog, only to my Facebook. 

I was asked the other day by someone with Chiari what brain surgery was like.  Truth is, I am not quite sure I am ready to write about that whole experience just yet.  I am slowly working up the nerve but I am just not there yet.  But I will share some of the thoughts I was experiencing prior to my surgery.  Most of you will never understand fully what I went through.  And for that, I am grateful.  But for some of the people who read this, you may completely understand because you have been there yourself.

The Countdown Begins!
I am scheduled for surgery on May 27th at Stanford University Hospital. My neurosurgeon and his team are some of the best there are and for that I am grateful. Even though these last few weeks have been a roller coaster of emotions for me, I am sure that these coming weeks will be an even bigger challenge for me.

It amazes me the thoughts that run through my mind now. I tell myself, what seems like hundreds of times daily now, that I will be fine. That I will make it through this and be back to my normal self in no time. Here is a sample of my thought process at any given moment (bare with me, usually my own logic confuses me lol)!

The evil "What If":
I tell myself that I will get to do the things that I have always wanted to do and that I will get to see my kids grow up. But the "What If's" are getting bigger by the hour. What if something goes wrong? What if I never heal properly? What if they remove too much and it makes things worse? The list goes on and on. And then the "What If's" turn to fear. And then to panic. It is in these moments that I have to breathe and search for peace. Whether it is in a short prayer or a simple hug from one of my kids or a friend who sends a simple "*hugs" text (Thanks for that Tara) I have to find that peace. It seems that the "What If's" can quickly control your entire life. The one thing I refuse to do is let it control me. I may have weak moments but I will get through.

The dreaded "Why Me!?!":
Oh this is a sneaky emotion! The "Why Me!?!" can sneak up and get you when you least expect it. Usually this emotion is following my failure to get the "What If's" under control properly. What did I do to deserve this? Why is this happening to ME!?! Why, why, why!!! Well here is the reality: Sometimes things just suck! There is no reason, no magic answer. The only answer is that it did happen and I have two choices. I can either sit in my house shouting about how unfair it is that I am barely 30 years old and facing major brain surgery OR I can put on my big girl panties and deal with it. Sometimes I just want to shout. I just want to scream and yell and cry. Thankfully, I have people around me that will listen to my tantrums and just be there for me. But most of the time I put on my big panties and I face the day. I have two children who depend on me to be strong. I need to show them and myself that you cannot let your emotions control you and that you have to choose your attitude. At the end of the day I cannot change what is happening. I can only trust that what is meant to be is happening and be grateful for each and every day that I have.

The misguided "What do I want to do today":
This is the hardest one for me. I tell myself that I need to live each day to the fullest. That I never know what will happen. That I could just as easily get into a car crash on the way to the hospital. So I find comfort in trying to live each with a little more love and a little more happiness. I try to find something new to do in each day and take lots of pictures. Sounds like great logic to me! Except here is the problem: While this seems like a take charge attitude it can actually lead you back to the evil "What If" emotion. When you "Seize each day" knowing full well you are facing a serious surgery you are reminded of the biggest "What If" of all. What if I don't make it through this surgery? And that is one "What If" I struggle with. So my roller coaster of emotions starts again.

Most of the time I am my normal self. So if you catch me on a ride just bare with me. If you are reading this and have already witnessed me on one of my rides thank you. Thank you for understanding. Thank you for being a shoulder to cry on. Thank you for giving me strength. I am finding some sort of weird strength in writing these notes. Maybe it is because I am acknowledging that I am afraid or maybe it is because in my own little way I am flipping off my fear and not letting it control me (most of the time). I don't know but either way I will get through this because I am a damn princess and that is what princess' do! ;o)

Holy Freak Out Batman...Brain Surgery in 2 Weeks!

How am I doing? Ha! Well I will start by saying that I am fine. No really, I am. That is my standard answer. That is what I tell 98% of the people that ask that question. I have found over the last few weeks that I am not so good at telling people how I feel. Which is surprising because just ask anybody and it is usually getting me to shut up that is the challenge! Maybe it is because I don't want them to worry about me. I want so badly to be the normal happy go lucky Amy that I have always been, to be the positive one that everyone is used to. Maybe it is because I know once I start to open up the tears come and once I start I cannot seem to stop. Maybe it is because I don't want to complain. I don't want to be the downer that is always complaining about poor me. Or maybe it is just because I don't always know how I am doing. Either way I cannot seem to be honest with people. So when I say that I am fine, just smile and silently know that I am not fine but that I will get better.

Truth is each day that passes seems to get harder and harder. Fear is a horrible feeling and I am not as good at ignoring that emotion as I used to be. It amazes me how difficult it is to get around right now. I am exhausted. And I don't mean if I take a nap I will be ok, I mean down to my soul exhausted. The fear in my heart is almost paralyzing. I look back to the weeks before this nightmare started and I want to be that girl again. I want to look at life as a gift. I want to be optimistic and happy. I want to love my life and everything in it. I want to be excited to go to work and excited to come home. I don't want to be angry. I don't want to ask myself why me and why now? The person I am right now is not me. Anyone who has known me for even a little bit knows that is not me. I am not an angry person by nature nor am I a person who sits back with self pity. I am surrounded by the love of family and friends. But I feel alone. I want to cry and scream and just wake up from this horrible nightmare!!!

But I can't wake up. I can't wish it away or even pray it away. Because the truth is that I have to deal with this. I have to stay as strong as possible for myself and for my kids. I have to learn that being strong doesn't mean being happy all the time. It means doing the best I can with what I have. And maybe the happiness that I felt right before all this started wasn't meant to tease me. Maybe it was meant to give me something to fight for. Maybe it is suppose to help me get through the recovery because I know what happiness feels like and I am willing to fight to get it back. I can't give up. I won't give up. Even in moments of pure fear I still make it through. I may not be as happy or as optimistic as I want to be right now but at least I am still going. And maybe that is my strength. Maybe Dori was right, "just keep swimming, just keep swimming"! What if strength isn't always about "swimming" with a smile, maybe just the act of "swimming" no matter how badly you want to stop is true sign of strength? I don't know. But for me, these next two weeks are like an evil band-aid. Part of me just wants to rip it off and part of me wants to soak it in water and slowly peel it off.

So I may not be just fine right now. But I will be ok. And after that I will be great! And after that, watch out because I will be back to my normal happy self and you all will be wishing that the hospital staff at Stanford kept me longer! =)

A Few Last Minute Thoughts...

Well the time is almost finally here. I leave tomorrow to head to the place that will change my life. Nobody can say for sure if it will be for the better or for the worse so of course there are a million things running through my mind. I have a few friends on FB that are going through the same thing as me but have not yet heard if they will require the surgery or not. I am not a doctor by any means but I hope these notes help them see a side of this that they might not have had the chance to see. The sad thing about this condition is that sometimes good news is hard to find. There is no cure. There is no magical answer that takes it all away. Even this risky surgery is not an end all. There is no way to tell if it will even work. That is the scary part. I could have this surgery, go through all of the pain and fear that goes along with it, and still get worse. The goal of the surgery is to stop the progression of the symptoms. But reality is that it doesn't always work. Even after this surgery I could get worse. It may not solve the issues and it could continue to wreck havoc on my heart. And sadly, this is what you read about most on the internet. Because most of the people who have the positive stories about how they overcame their obstacles, move on. They simply disapear off the Chiari message boards. They move on with their lives and never look back. So the good news is sometimes hard to find. But it is out there. I have had the pleasure of meeting two people on here who are the good news stories. They have had the surgery, and while they are not 100% they are living their lives the best they can. Those are the people I want to surround myself with. The people who run marathons within a year of this surgery, the people who go back to work and feel better than ever. That is what I want. I want to be the one that not only survived brain surgery, but kicked so much ass that I surprise everyone. So that is my hope. That is my goal. I will beat this and I will look back with a smile and know that all of the fears and worries were for nothing. But for now the fear is still there.

I have said this before, but the fear is paralyzing. It strikes at random times. I have noticed that the longer I try to keep it at bay the harder it hits when it finally does hit. I find myself staring off into space a lot more than normal (which was already a lot for this blonde chick lol). Yesterday was one of the best days I have ever had. I was kidnapped by Jason from work (against my will of course) and forced to eat Sushi at my favorite sushi resturaunt, hiked through the Sequoia's, sat for what seemed like hours watching the river flow and then had dinner at my beloved Thai resturaunt. Seriously, how spoiled can I get!?! But as great as it was I was scared. There were times that I didn't even hear a question. I was so lost in my own head that I didn't even know I was being spoken to. The thoughts are random. Even for me they are random. They are a mixture of "What if" and "Why me". Even great days like yesterday have a dark shadow around them. But I will survive. I will wake up from this surgery better than ever. So I have to trust the doctors. I have to trust that they will take care of me. I have to trust that God's will is being done. So I take comfort in that.

"What would you say?". That is the question of the day. No matter how hard I try, the thought of not coming home haunts me. I look around at the people in my life and I just want to scream. I want to tell them how important they are. How much they mean to me. I want to tell them to let go of the stupid stuff. To live each day better than the last. To let go of petty emotions and enjoy themselves. I want to tell them to stop getting in their own way and live their life. Its a mixture of great love for them and anger at the same time. I sometimes wish people could live one day like this. One day in my shoes wondering if you will go into surgery and never wake up. Not because I am mean but because it gives you a little different perspective. Suddenly, the little petty things don't matter. It doesn't matter what you have or what people think. The only thing that matters is love. What you gave and the people you shared your life with. If something happened to me what would people remember? What would be my legacy? Maybe if I had seen this perspective earlier in my life I could have done more. I could have given more of myself to others. I could have made it a bigger priority in my life to make a difference. I would have played with my children more, loved deeper and laughed about the petty stuff. I would have made sure that everyone in my life knew how important they were. That is what I would say. I wouldn't have waited to tell people how I felt. Because the reality is nobody is gauranteed tomorrow. We only have today. So LIVE it! Love it! Say what you feel. Take the trips you have always wanted to take. Tell the people who matter in your life how you feel. Love deeper and don't hold back. So my question to you is, what would you do? Where would you go? And most importantly, what would you say to the people in your life? Think about that for a minute and DO IT!!!

Fear is also a great motivator. It motivates me to get better. It drives me to overcome this. Because I am not done living this life. I am not done making my mark on this Earth. I am not done being obnoxious! I have so many things that I want to do. And I will get the chance to do them. So take this lesson from me. Don't wait. Don't assume you will have time to do the things you want to do.
So those are a few notes I wrote prior to my surgery.  The last one is the hardest.  To say the days and weeks that followed were not easy is an understatement.  But, I am here.  I am alive and nearly 2 years later still fighting like a girl!  Chiari may be a part of me now but it will not win.  Everyday I have hope.  And with that hope I find the strength to keep fighting.

Conquering Chiari One Step at a Time

Chiari.  Chiari.  Chiari.  If you have not yet heard of it, we must have never met.  Chiari is my life.  No, I don't mean there is nothing else in my life, just that Chiari is a part every aspect of my life.  This month has been a roller coaster.  And not the super cool roller coasters that I can no longer ride, but a busy whirlwind month.  Crystal and I got approval to host our very first Conquer Chiari Walk Across America in Fresno.  We are so excited to be able to spread awareness and hopefully help raise some money for the cause.  And if you have met me, you know I cannot do anything normal.  I will settle for nothing less than going BIG. 

Promo video.  Yes, a promo video.  Like a real video to help people understand the seriousness of the condition and why they should help out.  As far as I know, one has never been done.  In my many blessings, I have been blessed with some remarkable friends.  And these remarkable friends just happen to produce video productions.  So I called in a favor and WHA-LA, we shot the video in LA a few weeks ago.  It was an amazing day.  Not only were we working on a video that could help spread Chiari Awareness, but we got the chance to hang out with fellow big brains!  Now, for those who have never faced something like Chiari, or any other disease/condition, you may not fully appreciate what it is like to be in the company of people who know exactly what you are going through.  It is inspiring.  For one whole day, we didn't feel alone.  I have been blessed with some amazing people in my life, but they don't always understand what I face on a daily basis.  And to be honest, that is OK.  I would never want them to understand because that would mean that they had it.  But to be in the company of people who not only understand, but also just shine with positivity is truly an amazing experience. 

Newspaper domination.  That is my goal, the first of many steps to complete world domination.  I met with Tammy again for more articles.  She is a local newspaper reporter who has helped cover my story in the past.  And boy is she a firecracker!  It seems I may have touched her heart because she is now dedicated to helping me spread awareness.  What an awesome friend she has become.  She is using her voice to help our cause.  That is why I try to find the positives when I tell my story.  Truth is, people are tired of hearing only negatives.  It starts to sound like whining, even though I am guilty of that at times too.  But when you are fighting for a cause, your voice needs to have some positives.  You have to try to inspire people to want to help.  It isn't always easy to find the positives in Chiari.  But they are there.  And as long as we are constantly looking for them we will continue to have hope.  Without hope, Chiari will always win. 

Chiari sucks.  Some days are better than others.  Some days are just plain horrible.  Chiari robs you of the ability to be who you want to be and who you once were.  It is easy to fall into the "poor me" trap.  I must admit, I do that from time to time as well.  But when you surround yourself with people who exude positivity, your life is enhanced.   I have seen the suffering that Chiari can bring.  I know so many people people who have faced multiple surgeries with no real improvement.  And it is hard.  But on the days where the pain is too much, or the uncertainty of the future starts to weigh on my heart, that is when I reach out.  To the ones who will lift me up instead of helping me to feel sorry for myself.  To the ones who find the wins in the smaller battles.  Chiari may have the upper hand in this war but if we can find hope in the smaller wins, we will always keep fighting. 

The following pictures are pictures of my team shirts from last year.  Going to rock them again this year!

 

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.