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**
Wednesday, December 21, 2011
Monday, December 19, 2011
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.
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.
Monday, November 14, 2011
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.
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.
Sunday, September 25, 2011
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.
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.
Sunday, September 18, 2011
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.
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.
Thursday, September 15, 2011
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!!!
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!!!
Friday, September 9, 2011
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 30th 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. 17th, 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!”
Monday, August 29, 2011
I made a lady cry today...
But in my defense I didn't mean to! Ha!
Today I had an interview with a reporter for one of the local newspapers. And aside from the fact that I made her cry, it went pretty well. Turns out my story is pretty amazing to someone who hasn't heard it before. She called me an inspiration, which is a little more than I expected but it felt good to see once again something good come from this crazy life. Let me explain. The other day while home sick I had an idea *gasp*. For those of you who know me, that can be a pretty scary thing. My ideas are usually pretty off the wall and slightly crazy. But they do seem to work out a lot. Anyways, I was sitting at home and I saw that one of the other Chiari Walk sites in Oklahoma were able to get their story on the news. What a great idea! The Walk is about 6 hours from here but that doesn't mean it doesn't need exposure. It doesn't mean people here in the Valley don't need to know about Chiari and ways they can help. And it definitely doesn't mean there aren't people here that might need someone to reach out to them and support them! So it got me thinking. Now, being the complete shy girl that I am (bahahaha) I decided to make a few phone calls to people I know that might be able to help. A few phone calls later and an email from a local reporter ends up in my email! Success!!! First the newspaper and then the news and then maybe world domination? Yes, world domination seems like the obvious next step!
When I was first diagnosed in 2008 I was terrified. The Internet is a double edged sword. You want to know all about your diagnosis but then you see all the horror stories as well. And when you are dealing with a major medical issue that is extremely scary. I only saw the bad situations. The message boards are filled with people who are suffering and hurting. They have nowhere else to turn at times because nobody else understands what we face. So they lean on each other. But for someone who is newly diagnosed that can be incredibly frightening. I believe there are plenty of success stories. People who have had the surgery and are doing relatively well. But they sort of disappear off the message boards. They move on and don't want to look back. And who can blame them? Why would you want to be reminded of what could happen? Because the simple truth about Chiari is that there is no cure. So why would you want to remind yourself of the suffering that comes with Chiari? And I did that too for awhile. I ran away from everything and everyone Chiari. After awhile though it hit me. I have been blessed with a pretty good recovery. I need to do something with it. I need to stand up and fight for awareness for people who cannot.
So world domination is, of course, my only option. Only then will people truly take Chiari seriously. So that is my plan. I realized last week that I keep saying I want to do more but I hadn't really done anything. Now I am. Now I am going to get out there. I am going to help spread the word. 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. 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!
Today I had an interview with a reporter for one of the local newspapers. And aside from the fact that I made her cry, it went pretty well. Turns out my story is pretty amazing to someone who hasn't heard it before. She called me an inspiration, which is a little more than I expected but it felt good to see once again something good come from this crazy life. Let me explain. The other day while home sick I had an idea *gasp*. For those of you who know me, that can be a pretty scary thing. My ideas are usually pretty off the wall and slightly crazy. But they do seem to work out a lot. Anyways, I was sitting at home and I saw that one of the other Chiari Walk sites in Oklahoma were able to get their story on the news. What a great idea! The Walk is about 6 hours from here but that doesn't mean it doesn't need exposure. It doesn't mean people here in the Valley don't need to know about Chiari and ways they can help. And it definitely doesn't mean there aren't people here that might need someone to reach out to them and support them! So it got me thinking. Now, being the complete shy girl that I am (bahahaha) I decided to make a few phone calls to people I know that might be able to help. A few phone calls later and an email from a local reporter ends up in my email! Success!!! First the newspaper and then the news and then maybe world domination? Yes, world domination seems like the obvious next step!
When I was first diagnosed in 2008 I was terrified. The Internet is a double edged sword. You want to know all about your diagnosis but then you see all the horror stories as well. And when you are dealing with a major medical issue that is extremely scary. I only saw the bad situations. The message boards are filled with people who are suffering and hurting. They have nowhere else to turn at times because nobody else understands what we face. So they lean on each other. But for someone who is newly diagnosed that can be incredibly frightening. I believe there are plenty of success stories. People who have had the surgery and are doing relatively well. But they sort of disappear off the message boards. They move on and don't want to look back. And who can blame them? Why would you want to be reminded of what could happen? Because the simple truth about Chiari is that there is no cure. So why would you want to remind yourself of the suffering that comes with Chiari? And I did that too for awhile. I ran away from everything and everyone Chiari. After awhile though it hit me. I have been blessed with a pretty good recovery. I need to do something with it. I need to stand up and fight for awareness for people who cannot.
So world domination is, of course, my only option. Only then will people truly take Chiari seriously. So that is my plan. I realized last week that I keep saying I want to do more but I hadn't really done anything. Now I am. Now I am going to get out there. I am going to help spread the word. 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. 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!
Friday, August 26, 2011
Must be doing something right....
Good Morning!
For the past few days I have been knocked down by some sort of strange mutant cold that I am almost positive has a mind of it's own. It is having entirely too much fun messing with me and I am on the verge of conquering it. But this morning this evil cold jumped to Niko. Little man is now sick with pretty much the same symptoms I have been having. So we turned the living room into our own little hospital room. The couches have pillows and blankies. We are beginning our Star Trek Movie Marathon and I have homemade chicken soup for lunch. Sick days suck but once again I have my blessings. As little man was lying on the couch, curled up and not feeling well he looked up and asked me if I needed anything. Completely on his own. I said I was ok and he said he could get me some water if I was thirsty. Now, being a Mom, I had to fight back the tears. Here was this little boy, sick and sleepy and he was worried about me. What an insanely proud moment.
One of my greatest wishes for my children is that they lead a life of serving others. I want them to, of course, attend to their needs but try to focus more on others. I truly believe that if you live your life serving others you will get more joy out of life then just trying to serve yourself. When we focus so much on our own needs we loose sight of what is really important. Instead of focusing on "stuff" we should be focusing on each other. We should be focusing on the needs of others.
In the weeks before my surgery I was terrified. There was no way to know how the surgery would go. I had heard the horror stories and I had lost friends. Every morning I would wake up with the knowledge that May 27, 2010 could be my last day on this planet. What a traumatic time that was. But in those weeks I learned a great deal. Facing your own mortality does things to you. It puts your life into perspective. And man does it mess with your head. But it made me realize so much. The things I wanted out of life changed. The things I thought about were not the car I drove or the clothes I had or the money in the bank. I never even thought about things like that. Instead, my mind focused on the memories that I had. The things I did with my kids and everyone else. The flashy things all disappeared. They meant nothing. I never once wished I had a nicer anything. I wished I had spent more time with my lil monkeys. I wished I had spent more time with my family and friends. Not buying stuff, but making memories. I wished I had spent more time leaving a legacy on this Earth. Talk about mixing up my bucket list! But I wouldn't change that. I am glad that I got to see life differently. I sometimes wish others could have just a moment like that. A defining moment in their life that makes them see what is truly important. That it is not what we get in this world that matters but what we give.
My little man is learning to serve others. What a joyful realization to have as a Mother. At a time where it would be completely and totally understandable for him to just focus on himself he is trying to help me. What an amazing little man I have been blessed with!
For the past few days I have been knocked down by some sort of strange mutant cold that I am almost positive has a mind of it's own. It is having entirely too much fun messing with me and I am on the verge of conquering it. But this morning this evil cold jumped to Niko. Little man is now sick with pretty much the same symptoms I have been having. So we turned the living room into our own little hospital room. The couches have pillows and blankies. We are beginning our Star Trek Movie Marathon and I have homemade chicken soup for lunch. Sick days suck but once again I have my blessings. As little man was lying on the couch, curled up and not feeling well he looked up and asked me if I needed anything. Completely on his own. I said I was ok and he said he could get me some water if I was thirsty. Now, being a Mom, I had to fight back the tears. Here was this little boy, sick and sleepy and he was worried about me. What an insanely proud moment.
One of my greatest wishes for my children is that they lead a life of serving others. I want them to, of course, attend to their needs but try to focus more on others. I truly believe that if you live your life serving others you will get more joy out of life then just trying to serve yourself. When we focus so much on our own needs we loose sight of what is really important. Instead of focusing on "stuff" we should be focusing on each other. We should be focusing on the needs of others.
In the weeks before my surgery I was terrified. There was no way to know how the surgery would go. I had heard the horror stories and I had lost friends. Every morning I would wake up with the knowledge that May 27, 2010 could be my last day on this planet. What a traumatic time that was. But in those weeks I learned a great deal. Facing your own mortality does things to you. It puts your life into perspective. And man does it mess with your head. But it made me realize so much. The things I wanted out of life changed. The things I thought about were not the car I drove or the clothes I had or the money in the bank. I never even thought about things like that. Instead, my mind focused on the memories that I had. The things I did with my kids and everyone else. The flashy things all disappeared. They meant nothing. I never once wished I had a nicer anything. I wished I had spent more time with my lil monkeys. I wished I had spent more time with my family and friends. Not buying stuff, but making memories. I wished I had spent more time leaving a legacy on this Earth. Talk about mixing up my bucket list! But I wouldn't change that. I am glad that I got to see life differently. I sometimes wish others could have just a moment like that. A defining moment in their life that makes them see what is truly important. That it is not what we get in this world that matters but what we give.
My little man is learning to serve others. What a joyful realization to have as a Mother. At a time where it would be completely and totally understandable for him to just focus on himself he is trying to help me. What an amazing little man I have been blessed with!
Tuesday, August 23, 2011
The FB Note that created a blogger....
After writing many "notes" on fb and only publishing the "positive" ones I decided last week to post one that had the raw emotions that I sometimes face. I had never previously posted one like that, even though I had written them, for fear of appearing weak. 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. But I learned after posting this note that sometimes it is far braver to let your true emotions out sometimes. It doesn't mean I am weak, it just means I am human. After posting this, I received a few comments from Chiarians and non-Chiarians thanking me for my honesty. I also received a few private messages thanking me for putting into words what they were feeling. Thanking me for helping them find a way to voice their fears. Wow! I never ever expected to hear that. So here is the note that started my wheels turning to starting a blog:
"Aww manno! Is she really going to talk about this again!? Geesh, it's not like it is a big deal or anything. I mean, it's not like it was brain surgery or anything, so suck it up.....oh wait...what....it WAS brain surgery???
Yes, I am in one of those moods. They sneak up on me when I am at my weakest moments. The moments where the pain is too much. When the meds don't help and I just want to go to sleep and wake up another person. Or wake up and have this all be a horrifically long nightmare. But sadly, this is my life. These are the times I want to scream that life is not fair, that I wish I had never heard the word Chiari and where I could just forget for a moment that my life will never be normal. Now I know, nobody would ever classify me as normal anyways but I wish I was. I wish I could get up every morning like normal people. Get ready for work without any pain. Wake my children up without worry that one day I may not have the strength to do that. Send them off to school without the jab of emotions that come with worry that Chiari could affect me being the Mother that they deserve. Head off to my normal job and have a normal day. Never once saying a silent prayer for my fellow Chiarians who are suffering. Never once feeling a weird stab of pain in my head or neck or hands or anywhere else and panicking that it might turn into something worse. Or better yet, I wish I could make it just one day without the memories of the two weeks before my surgery haunting me. The helplessness that comes with facing your own mortality and this condition.
These weak moments are not just because of the pain. They have meds for that, and trust me, once I say "brain surgery" the doctors have no prob giving me pain meds. And even when they don't work I know it will pass. The pain is just the beginning. It is the other side of Chiari that makes me weak. It is the emotional trauma (may sound dramatic, but trust me it is traumatic) that gets to me. Not only do I have to deal with the stress that I faced before the surgery, I have to deal with the fact that I am not even cured. 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). HOPEFULLY!?! Sometimes I can put on a brave face. I can do my best impersonation of a positive Amy. I can tell myself and everyone around me that I WILL be ok. That I am so badass that I will never have to worry. But that is a lie. A great big lie to hide the fact that everday I am terrified of the future. Every time my head hurts it is the emotional side that hurts the worst. Because I cannot deny the fact that I have Chiari. I cannot pretend to be fine. All I can do is cry and question why I have to endure this. Wonder why this is happening to me. And in these moments I can't find the positives. I forget that I am blessed to be alive. That I am blessed that I only have these headaches occasionally. That there are Chiarians everywhere who have them everyday. I forget that I am one of the "lucky" ones. Because the truth is, I am.
But I don't want to be a Lucky Chiarian. I want to be normal. I want to go for a run and ride roller coasters. I want to jump outta a plane and white water raft. I want to tuck my kids in every night and know that I will always be able to take care of them. I took the kids to Sea World last week and Niko asked if we could ride one of the coasters. Before I could respond he, innocently enough, said, "Oh I forgot, your broken". I know he didn't mean it the way it sounded but I want to live my life without constantly remembering that I broken. Now I realize that this isn't my normal happy self. But the truth is I want people to see this side of the condition as well. I have spent the last 2 years sugar coating the realities that I face so people don't worry. And so that I don't appear weak. But this is me. Most days I am strong. But today I am not. Today I am hurting. Today I am in more pain than a normal person could ever imagine. Today I am admitting what I have been too afraid to admit, I am afraid. I have had these days before. So I know tomorrow will be better. I know that days like today are a part of my life now. And tomorrow I will go back to my happy self and continue to fight for Chiarians who cannot. But today, I am throwing a tantrum!"
That is my note. It is not pretty. It is not happy or exciting. But it is real. It is true raw emotions that come at my weakest moments. I don't write too many like that, kinda goes against my need to stay positive. But sometimes it is ok to let your emotions take over. Have a good cry and then get back up, brush the dirt off your shoulders and keep on going. I mean, without moments like that how can we ever truly appreciate the good times!?!
"Aww manno! Is she really going to talk about this again!? Geesh, it's not like it is a big deal or anything. I mean, it's not like it was brain surgery or anything, so suck it up.....oh wait...what....it WAS brain surgery???
Yes, I am in one of those moods. They sneak up on me when I am at my weakest moments. The moments where the pain is too much. When the meds don't help and I just want to go to sleep and wake up another person. Or wake up and have this all be a horrifically long nightmare. But sadly, this is my life. These are the times I want to scream that life is not fair, that I wish I had never heard the word Chiari and where I could just forget for a moment that my life will never be normal. Now I know, nobody would ever classify me as normal anyways but I wish I was. I wish I could get up every morning like normal people. Get ready for work without any pain. Wake my children up without worry that one day I may not have the strength to do that. Send them off to school without the jab of emotions that come with worry that Chiari could affect me being the Mother that they deserve. Head off to my normal job and have a normal day. Never once saying a silent prayer for my fellow Chiarians who are suffering. Never once feeling a weird stab of pain in my head or neck or hands or anywhere else and panicking that it might turn into something worse. Or better yet, I wish I could make it just one day without the memories of the two weeks before my surgery haunting me. The helplessness that comes with facing your own mortality and this condition.
These weak moments are not just because of the pain. They have meds for that, and trust me, once I say "brain surgery" the doctors have no prob giving me pain meds. And even when they don't work I know it will pass. The pain is just the beginning. It is the other side of Chiari that makes me weak. It is the emotional trauma (may sound dramatic, but trust me it is traumatic) that gets to me. Not only do I have to deal with the stress that I faced before the surgery, I have to deal with the fact that I am not even cured. 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). HOPEFULLY!?! Sometimes I can put on a brave face. I can do my best impersonation of a positive Amy. I can tell myself and everyone around me that I WILL be ok. That I am so badass that I will never have to worry. But that is a lie. A great big lie to hide the fact that everday I am terrified of the future. Every time my head hurts it is the emotional side that hurts the worst. Because I cannot deny the fact that I have Chiari. I cannot pretend to be fine. All I can do is cry and question why I have to endure this. Wonder why this is happening to me. And in these moments I can't find the positives. I forget that I am blessed to be alive. That I am blessed that I only have these headaches occasionally. That there are Chiarians everywhere who have them everyday. I forget that I am one of the "lucky" ones. Because the truth is, I am.
But I don't want to be a Lucky Chiarian. I want to be normal. I want to go for a run and ride roller coasters. I want to jump outta a plane and white water raft. I want to tuck my kids in every night and know that I will always be able to take care of them. I took the kids to Sea World last week and Niko asked if we could ride one of the coasters. Before I could respond he, innocently enough, said, "Oh I forgot, your broken". I know he didn't mean it the way it sounded but I want to live my life without constantly remembering that I broken. Now I realize that this isn't my normal happy self. But the truth is I want people to see this side of the condition as well. I have spent the last 2 years sugar coating the realities that I face so people don't worry. And so that I don't appear weak. But this is me. Most days I am strong. But today I am not. Today I am hurting. Today I am in more pain than a normal person could ever imagine. Today I am admitting what I have been too afraid to admit, I am afraid. I have had these days before. So I know tomorrow will be better. I know that days like today are a part of my life now. And tomorrow I will go back to my happy self and continue to fight for Chiarians who cannot. But today, I am throwing a tantrum!"
That is my note. It is not pretty. It is not happy or exciting. But it is real. It is true raw emotions that come at my weakest moments. I don't write too many like that, kinda goes against my need to stay positive. But sometimes it is ok to let your emotions take over. Have a good cry and then get back up, brush the dirt off your shoulders and keep on going. I mean, without moments like that how can we ever truly appreciate the good times!?!
Welcome!
A little about me....
My name is Amy. I am a born and raised Cali girl who learned to have a love of cooking from her Daddy. I believe God has blessed me in more ways than I will ever truly ever be able to appreciate, although I will keep trying to count them. My greatest blessing are my amazing children. They are my very reason for living and give me more strength to make it through the storms. I am surrounded by the most amazing people in the world. My family and friends bring me more joy and happiness than I could ever hope to repay. I love deeper than I should at times and even though it has lead me into heartache in the past I refuse to love any less. I have also been blessed to have something called 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. At 30 years old you should still feel invincible. But just a few short months after my 30th birthday and as a newly single Mom, I underwent major brain surgery at Stanford University and lived to tell the stories. The emotional and physical trauma most people will never be able to understand and for that I am grateful. The scar may be covered by my hair but I will not let anything cover my voice for my Chiari family. I will spend every "healthy" day I have fighting for those who cannot and for those that have lost their lives due to this condition.
But this blog isn't just about Chiari. It is about finding simple blessings in everyday life. It will be about challenging myself to grow. And about finding new ways to teach my children to have a servant's heart. But most importantly it will be a chance for me to reflect on life, even if nobody else reads it. Because no matter what happens in this life, I am not guaranteed a tomorrow so I will make the most of each and everyday!
My name is Amy. I am a born and raised Cali girl who learned to have a love of cooking from her Daddy. I believe God has blessed me in more ways than I will ever truly ever be able to appreciate, although I will keep trying to count them. My greatest blessing are my amazing children. They are my very reason for living and give me more strength to make it through the storms. I am surrounded by the most amazing people in the world. My family and friends bring me more joy and happiness than I could ever hope to repay. I love deeper than I should at times and even though it has lead me into heartache in the past I refuse to love any less. I have also been blessed to have something called 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. At 30 years old you should still feel invincible. But just a few short months after my 30th birthday and as a newly single Mom, I underwent major brain surgery at Stanford University and lived to tell the stories. The emotional and physical trauma most people will never be able to understand and for that I am grateful. The scar may be covered by my hair but I will not let anything cover my voice for my Chiari family. I will spend every "healthy" day I have fighting for those who cannot and for those that have lost their lives due to this condition.
But this blog isn't just about Chiari. It is about finding simple blessings in everyday life. It will be about challenging myself to grow. And about finding new ways to teach my children to have a servant's heart. But most importantly it will be a chance for me to reflect on life, even if nobody else reads it. Because no matter what happens in this life, I am not guaranteed a tomorrow so I will make the most of each and everyday!
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