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.

Superhero's don't wear capes, they have Taz tattoo's...

There is this man.  He is not your typical 50's something man.  Most weekend mornings you can find him in bed with a cup of coffee, pastry of some sort and Looney Tunes on the tv.  And for as long as I can remember he has been the most amazing man on the face of this planet.  That man is my Dad.

Growing up with my Dad was interesting.  My earliest memories of my Dad are of him coming home from work in his flannel shirts with candy in his pockets.  Not sure how many times that actually happened but I am pretty sure it was frequent enough for me to remember.  I think we were the only kids who's Dad woke THEM up for Saturday morning cartoons!  Then there was bedtime.  This is where I learned to love to read.  I remember bedtime as a time for stories.  And let me tell you, any man who loves cartoons as much as my Dad is quite the storyteller.  Even as an adult I have searched the Internet to find several of the books he used to read to me.  My favorite, of course, being Dr. Suess' A Wocket in My Pocket.  And then there was laughter.  Constant laughter.  He is always smiling.  It is quite contagious.  Even in the rough times there was laughter.  I remember being in middle school away at church camp.  Because of a "situation", that I don't feel like getting into on here, my Dad had reason to fear for my safety.  Instead of driving up to the camp (which I am pretty sure he made it up there in record time) and taking me home, he stayed in a counselors cabin and watched from afar.  He stayed far enough away so that I could enjoy the camp but close enough to protect me if I needed it.  And after that, even at a young age, I knew that he was always there for me, even if I couldn't see him, he was there.  There is an amazing amount of comfort in knowing that no matter what you do, you always have someone who will catch you if you need it. 

I remember the day I got my drivers license.  What an awesome day as a teenager!  We got home and he handed me the keys to my new car and said, "Bye".  I remember feeling shocked almost not knowing what to do.  I thought for sure I would be on some probation of some sorts but no, he was confident in my abilities and sent me on my way.  As a parent, I am sure he was slightly afraid at me driving alone, but he let me go.  As I got older I remember talking to him and him saying, "I have to let you make your own mistakes so that you will learn from them".  Back then it didn't make sense.  But now it does.  When I look back over my teenage years I can see my mistakes.  I can seriously laugh at the choices I made and wonder how I thought they were right.  But the hidden beauty in it is that I did learn from my mistakes.  And every mistake I made or bad thing that happened I can hear my Dad reminding me that I am not a victim.  That I can choose to live as a victim or I can simply learn from it an move on.  That I need to refuse to feel sorry for myself and just keep going.

My story has been put in several newspapers over the last week or so.  I have received several calls, emails or comments from people who call me brave.  They have commented that they cannot believe how I kept my humor and optimism during such a trying time.  But when I look back over my life I know exactly how.  I am my Daddy's daughter. 

Dad,
If you read this, know this.  There have been times in the last year or two where I have felt completely helpless.  I have felt like the world was crashing down on me and that I couldn't keep going.  But in each of those moments I heard your voice.  Reminding me that I am not a victim.  That I need to find the strength to keep going.  I heard your laughter and optimism encouraging me to keep going.  That is where I found my strength.  You are my inspiration and my hero.  Thank you for raising me to be the woman I am today.  I may joke that being raised by you, gave Jenn, Nick and I no chance at being normal, but I wouldn't want it any other way.  I love you from the bottom of my heart to the top of my oversized brain!!!

So you see, real Superhero's do not wear capes, they have Tazmanian Devil and Yosemite Sam tattoo's!!!

NAS Lemoore Golden Eagle Newspaper Article!

Here is my article!  I love the title!!!  If you read this Tammy, THANK YOU SO MUCH for helping me raise awareness!  You did a FANTASTIC JOB!!!

Warning: Humor may be hazardous to your illness

By Tammy Eskew

Golden Eagle Staff Writer

Just a few short months after Amy Valentino’s 30^th birthday and as a newly single mom, she underwent major brain surgery at Stanford University and despite the odds against her, lived to tell about it.

“The day of the surgery was beyond scary. When I was woken up by the docs for a round of tests after the surgery, they asked me what year it was. I said, “2045”, giggled and said, “just kidding” and passed back out,” explained Valentino with a big grin on her face. “The nurse told me she never heard someone crack a joke right after major brain surgery and that my mental clarity was beyond amazing for it being so soon after the surgery. So what I learned from that is apparently, the part of my brain that they removed was not responsible for my sense of humor! Thank God.”

Valentino was diagnosed with a rare neurological disorder called Chiari (kee-AHR-ee) Malformation which causes brain tissue to protrude into your spinal canal. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord.

This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body (like breathing and the beating of your heart), or to a buildup of spinal fluid in the brain or spinal cord (which carries the risk of becoming paralyzed).

Chiari patients experience painful headaches, neck pain, tingling in the hands and feet, dizziness, vision problems and in rare cases, chest pain and abnormal breathing. There is no cure for the condition and surgery is a last resort used to reduce symptoms. Many patients do not make it through the surgery, so when Valentino was told that her surgery was now medically necessary, she experienced a tidal wave of emotions and through it all kept her sense of humor.

“With Chiari you put on a brave face everyday. Not because people aren't there to support you but because if you put on any other face, you risk breaking down completely. And no matter how awesome a person you may be (which lets be honest, I am pretty freakin awesome...lol) nobody wants to be around someone who is on the verge of tears at any given moment,” explained Valentino.

For six weeks leading up to the surgery, Valentino struggled with the evil “What ifs,” the dreaded “Why me” and the misguided “Seize the day.” She put on a brave face to the outside world, but was full of turmoil and uncertainty on the inside.

“It seems that the “What Ifs” can quickly control your entire life. The one thing I refused to do is let it control me. The “Why Me” can sneak up and get you when you least expect it. When you “seize each day” knowing full well you are facing a serious life or death surgery, you are reminded of the biggest “What If” of all. What if I don’t make it through this surgery?” explained Valentino. “The reality is sometimes things just suck! There is no reason, no magic answer. The only answer is that it is happening and I have two choices: I can sit and complain about how unfair life is or I can put on my big girl panties and deal with it.”

The biggest fear of all for Valentino was leaving her beloved children, Niko, 9 years and Kylie, 7 years, motherless. It was because of them that she faced her illness, embraced life and focused on all her blessings.

“I am truly blessed. I have the most amazing children on the face of the planet. I have family that will stand by me and do anything that I need. I am surrounded by friends who constantly amaze me with their love and friendship. I work for a company (NAS Lemoore Lincoln Military Housing) that is full of the most caring people on the planet and who have stepped up and offered their help and support. My boss would give the shirt off his back to help a fellow employee,” said a grateful Valentino.

Valentino was surrounded by family, friends and co-workers, including her boss and his wife before she was wheeled into surgery. Valentino successfully recovered from the surgery and returned back to work within an unheard of five weeks.

“I truly felt blessed having my entourage there. I’m not kidding. I had so many people there which helped ease my fears because everyone was cracking jokes and talking about good times,” explained Valentino. “When I got home from the hospital, in my living room was a brand new recliner with a blanket and gift cards from my co-workers. I had been trying to save up for one because I knew it would help with my recovery, but I ran out of time. What a wonderful surprise!”

Recovery was difficult, painful and not possible without the love and support of friends and family. However, the journey is not over for Valentino.

“I faced and recovered from a horrible surgery only to have the doctors tell me they "hope" I will be ok. That "hopefully" my quality of life will be ok. That "hopefully" I will not need repeat procedures and something called "brain slumping" (yes, it is as bad as it sounds),” explained Valentino. “At the same time, I have also been blessed with having Chiari Malformation. It may not be your standard "blessing" and at times it is harder than I can even put into words, but it has taught me more about life than your average 30's something adult has the opportunity to learn.”

It takes a lot of courage, perseverance and resilience to be able to take a bad situation and turn it into something positive, but that is exactly what Valentino does each and every day. She truly is an inspiration to those around her.

“You have to choose your attitude. At the end of the day, I cannot change what is happening. I can’t wish it away or even pray it away. 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,” explained Valentino.

What she has is a voice and a great sense of humor. Laughter truly is the best medicine. Valentino wants to use her voice to help spread the word about Chiari. Not a lot is known about the condition and so much research is needed to help spread awareness. The Conquer Chiari Walk Across America is a series of local awareness and fundraising walks held across the country on the same day. On Sept. 17^th, a 5K walk will be held in Irvine, California at the Arnold O. Beckman High School at 9 a.m. to help raise funds towards Chiari research.

“It’s the first time they have had a walk in CA. I want to help raise more money for awareness so that they can figure it out. The earlier the diagnosis, the better. How amazing it would be to have a cure for this? Most people have never even heard the word Chiari, let alone know what it is. And there are so many out there who have Chiari and need support,” explained Valentino. “I want to be the positive story they read about. The story that gives them hope because at the end of the day the only thing we have is hope. If I can reach at least one person in the Valley then I will be happy. So keep an eye out in the papers or maybe even the news. You might see my face! Because after all, I am kinda a big deal!”