It's one thing if you have planned for "retirement" at 45 years old. You've worked, saved, invested, planned, and the time comes when you finally hit that magical year and you can now quit that daily grind and live out your dreams. Yeah...that's not us. Not by a long shot.
Looking at our situation and weighing out all the options has been an interesting endeavor. At first, we didn't consider many options, because if you're dying there's really only the one option left. But since the tide has shifted a bit, we've had quite a few weeks of thinking about the future and what exactly all the options for us are at this point and how we might be answering them.
Questions we've considered include: 1- Can Scott return to his career? 2- If he cannot return to his job, are there other things he can or wants to do instead? 3- Can he take a medical retirement at this point? 4- Is social security disability something he should consider? 5- What if we lose our current health care benefits?
Returning to his career doesn't seem like it's possible at this point, but we don't know that for sure. He is a microwave radio supervisor. Sounds easy enough right? You just turn on the tunes and wait for someone to open the microwave and put something in to cook. It's his job to make sure the light goes off and food gets done, but not over cooked. We really hate that rubbery microwave food.
You didn't know there was a job like that? There isn't, that we know of. That's not what a microwave radio supervisor does. But it's been asked and we think it's hilarious people would think that. Anyway....he works on complicated high tech microwave radio equipment. You know... the cell towers you see along the road, or off in the distance on a high hill? Those dishes bounce radio frequency from one site to another. He climbs those towers to install or take down that equipment. He maintains a complicated system of sites all over the state that transmits radio signals responsible for wireless communication. Here in Wyoming, this radio system is what the highway patrol uses to communicate to each other and dispatch. It's a big deal.
Along with all the installation of hardware and software, monitoring, and updating the systems, he's required to drive long distances, climb over 100 feet, lift heavy equipment, remember complex electronic codes and be able to trouble shoot problems remotely. This is a super technical job which requires a lot of physical and mental stamina. The doctor will not clear him to drive yet, and will not clear him to climb while taking the anti-seizure medication. Having a seizure while 100 feet up is not in anyone's best interest.
The thing is, this is a vital, highly intelligent man, with a very specialized skill set which a very few people outside the military possess. He is a valuable asset and very rare breed in his field. I don't like to think his expertise or his talent will be wasted because he can't climb or drive long distance anymore. Surely, there will be someway, he can continue to provide the world with his kind of communication.
Is there anything he can do instead? There are many options for him. Mostly because he can do anything. Remember, he's a hunter. He loves guns and ammo. Scott's been given an amazing opportunity to finally have the time to work on the guns he loves so much, since being home. He is passionate about them and has always wanted to do this as a full time gig. He could definitely make this a career, if need be. Scott Cooley, Gun Smith. Sounds pretty fantastic. It just doesn't come with the great benefits and co-workers that his current job does, which does make it tough to think about.
He isn't eligible for a medical retirement at this point. We found out yesterday he doesn't have enough years in, to apply. With that, he could possibly qualify for social security disability, but has to be unemployed to apply for that. It takes several months to hear back about acceptance, and when accepted, it still takes 24 months to get any medicare health benefits, which only covers him and not the whole family.
I keep finding hope though. I hope there is an opportunity out there for us greater than our current circumstance. We are making it and we will continue to do whatever we have to. We are a pretty talented bunch. We try and not be fearful of this new uncharted territory. I hope Scott does what makes him happy and gives him the most sense of gratification. I hope we are learning the lessons we are supposed to learn and in return, teaching them well.
For now, we know we will find a way, or ways will be created for us, to continue to support our family and meet the needs of this health challenge. It may not come in the way we expect.... because as we have learned already, things in life rarely do.
Friday, April 25, 2014
Tuesday, April 22, 2014
Don't Forget
I find myself saying, "Don't forget..." a lot these days. I'm not sure if it's the change in routine, or the brain tumor, or what it is. I don't think I ever really thought to much about it before, but I constantly have to say things like, set a reminder and make a note. But while I was thinking about all the little minor tasks and reminders needed I thought what about all the things that are so important. I tired getting Scott to write a journal, I think he started :) I hope he continues to write it down. I'd really love to know what's knockin around in his head that he doesn't talk about or readily share.
But in the mean time, I've decided I need to make a list of things for him and my children to never forget. I'm never sure if they get what I am trying to do or not. But I have to just go with this one, it's inspired and I don't want to forget....
Don't forget I love you for eternity. I have loved you since we first met. I will never stop. It's not something I will ever forget how to do. Don't worry, I got this! And so do you, you'll always have my love, no matter what.
Don't forget you're vital. You are the man of this house, we all look up to you. We are depending on you to get through this with us. We know it's hard and there is a lot of different kinds of pressure now. But Don't forget, you're not in this alone.
Don't forget to be thankful for every single minute you have. We are so grateful you're here. We know you don't always need to be around other people and need your space and time alone. But don't forget to come back and love us that much more.
Don't forget you are a hero and an inspiration to many people. To your family, there is no end to the appreciation for the things you do daily for us. You are the fixer, the mender of all things broken around here. We know you don't have to do all that for us, but we are so glad that you can and do! Don't forget, that you aren't expected to fix this or us. We know it's not in your control and it's okay. We love you, even when you can't fix it.
Don't forget that you are still you. You have been forced into a different circumstance. But the person you are, is still there. Don't forget to laugh, be silly, have fun, and find the joy in things you love to do and the people you enjoy being with. There is no one else like you and you make this world that much better for being in it. Don't forget, no one else can be you and bring your kind of perspective.
Don't forget that there is something bigger than you, and bigger than this trial you are experiencing now. Don't forget to be grateful for the knowledge you have, for your understanding, for the plan, and for your abilities, no matter what they are.
Don't forget to take a minute and thank your Creator for all that you have been given. For all the beauty there is in the world, and for all the times He has been there to fill you up when empty, to bring you hope when hopeless, to carry you through when you didn't have one more step left in you. Don't forget you are precious to Him and you're soul has worth beyond measure.
Don't forget there are a thousand things left to say, that will go unsaid. It's your attitude and the way you treat others that matters most. You are a light and a gift that will always be cherished and a savior in your own way. Don't forget that. You'll have a million other things to forget, such as regret, disappointment, sorrow, and hurt, as time goes on.
Don't forget that those honey-do's and projects, the daily schedule, and where you put your sunglasses, don't compare to the the things most important. Remember you are loved. Remember you are unique and special, and that no one else can replace you in this world. Remember, you have a divine purpose and that no matter how long you get to live this life, you got to have one. That's a big deal. Remember who you are to your family and friends. They love you for that. Remember you are an inspiration and you have a responsibility to keep on keeping on.
Don't forget.....please remember.....the only thing that matters is what you do with what you're given.
Remember what hope feels like and don't forget it's always there for you.
But in the mean time, I've decided I need to make a list of things for him and my children to never forget. I'm never sure if they get what I am trying to do or not. But I have to just go with this one, it's inspired and I don't want to forget....
Don't forget I love you for eternity. I have loved you since we first met. I will never stop. It's not something I will ever forget how to do. Don't worry, I got this! And so do you, you'll always have my love, no matter what.
Don't forget you're vital. You are the man of this house, we all look up to you. We are depending on you to get through this with us. We know it's hard and there is a lot of different kinds of pressure now. But Don't forget, you're not in this alone.
Don't forget to be thankful for every single minute you have. We are so grateful you're here. We know you don't always need to be around other people and need your space and time alone. But don't forget to come back and love us that much more.
Don't forget you are a hero and an inspiration to many people. To your family, there is no end to the appreciation for the things you do daily for us. You are the fixer, the mender of all things broken around here. We know you don't have to do all that for us, but we are so glad that you can and do! Don't forget, that you aren't expected to fix this or us. We know it's not in your control and it's okay. We love you, even when you can't fix it.
Don't forget that you are still you. You have been forced into a different circumstance. But the person you are, is still there. Don't forget to laugh, be silly, have fun, and find the joy in things you love to do and the people you enjoy being with. There is no one else like you and you make this world that much better for being in it. Don't forget, no one else can be you and bring your kind of perspective.
Don't forget that there is something bigger than you, and bigger than this trial you are experiencing now. Don't forget to be grateful for the knowledge you have, for your understanding, for the plan, and for your abilities, no matter what they are.
Don't forget to take a minute and thank your Creator for all that you have been given. For all the beauty there is in the world, and for all the times He has been there to fill you up when empty, to bring you hope when hopeless, to carry you through when you didn't have one more step left in you. Don't forget you are precious to Him and you're soul has worth beyond measure.
Don't forget there are a thousand things left to say, that will go unsaid. It's your attitude and the way you treat others that matters most. You are a light and a gift that will always be cherished and a savior in your own way. Don't forget that. You'll have a million other things to forget, such as regret, disappointment, sorrow, and hurt, as time goes on.
Don't forget that those honey-do's and projects, the daily schedule, and where you put your sunglasses, don't compare to the the things most important. Remember you are loved. Remember you are unique and special, and that no one else can replace you in this world. Remember, you have a divine purpose and that no matter how long you get to live this life, you got to have one. That's a big deal. Remember who you are to your family and friends. They love you for that. Remember you are an inspiration and you have a responsibility to keep on keeping on.
Don't forget.....please remember.....the only thing that matters is what you do with what you're given.
Remember what hope feels like and don't forget it's always there for you.
Monday, April 21, 2014
Changed Relationships
We are down to 4 more weeks of waiting for more test results. Scott's not sleeping at night. I didn't realize how much this would affect me. I totally took for granted all the nights we'd just got to sleep together and wake up the same way. You don't realize how intimate that really is, until it's disrupted. I have always missed him, if we have been away for work or hunting or whatever. But this seems different somehow. We always seemed in sync before. Now we're trying to figure out how to get that back and it isn't working as well as I would like.
I miss him. And he's here. It makes no sense. It's hard and I hate it. He hates it. We have come to a place where we realize more than ever, that we are not in control of what is happening now. We can try to fight it, but there is no winning that fight, because it isn't up to us. We can't make it like it was. Too many factors are different. What we have to do now, is work on making this reality work better for us. It's work. No way around it.
In an earlier post, I mentioned this article The Things I Wish I Were Told When I Was Diagnosed With Cancer. I have found, that although we are not sure if we are facing cancer or not at this point, every single one of the things Jeff points out in his article is true for us.
Every relationship we have with others has changed, it's true. Some relationships have been reaffirmed. Some have gotten stronger. We have built new relationships with people. Sadly, some of our connections have deteriorated. A few people have shown us their worst. I'm not sure why exactly. I do know we are different as a result of what has happened here. This whole experience has changed us. That has to be expected I think. What was unexpected, is that some of the people we thought were the closest to us, are the very people who have turned away and or brought more sorrow and grief.
Is it intentional? Probably not. Or Maybe it is...I'm not sure. I do know that all we can do is put these new relationships, or lack thereof, into perspective and make a decision about how to move on.
I was sitting in church visiting with a dear woman, whom I've gotten to know a little over the past year. She was asking how I am doing with everything. I said to her things seem to be hard right now, but that I don't have a choice except to survive it well. She smiled and sweetly replied, "Oh... but my dear, you do have a choice." What this wonderful spirit pointed out to me, is something I already know. I don't have to be miserable, sorry, or negative. I do have a choice about how I feel and react. I can choose to survive it well...or not.
Some people can be downright mean, vicious or just plain nasty. Some assume that because I'm not a total mess every day, that everything is fine and we don't need any physical or emotional help. So also wrongly assume that we are above the sort of thing a medical fund was set up for. I have also been told that no one will know to look at me that anything is wrong. Hummmm. Is that a compliment?
I always think it's my fault when others react to me in a negative way and I do know why. But even being aware doesn't instantly take away the sting from that initial feeling of thinking I am somehow responsible for the way other people treat me or my family. We have had many hard, bitter lessons to learn throughout this journey. Just when I think I have conquered and over come the most difficult, another, even more formidable obstacle appears to try and steal away any hope I might have left.Sometimes those things are mere circumstances. Other times, those seemingly insurmountable obstacles are the people we love the most.
Fear is real. Anger is part of the journey. I have accepted that. I just don't want to live in it. I try to recognize the fear and the anger for what it is and understand it's okay to be off balance when the unknown is presented. I just don't want to make decisions based on that fear or out of anger. I try to decide things based on what feels good and right to me, knowing full well that may not be good and right for anyone else. Even confident, well adjusted people, face fear and get really angry, at some point in their lives. This situation forced us to face our greatest and feel angry about a lot of things. It was the first time, I have ever seen Scott truly scared of anything, and that scared me too.
It wasn't fear of dying. This fear was not for himself. One fear was that he would leave us behind and not be able to take care of us the way he wanted. Another fear was that his children, all of them, would never truly know him or how much he loves and cares for each one. Yet another fear, was knowing he would have no choice in leaving and the damage that might do to all of us. He never thought in a million years anything like this would be happening to him and he didn't plan for it. His greatest fear was that he would be leaving behind a mess for me to deal with without him and as it turns out that was exactly what I was afraid too. Not because I wouldn't have him. But because I knew there were certain people I could no longer count on to be there for me in his place.
The fact is, we will both die someday. Hopefully not too soon. But if we do, we are better prepared for such a thing. Some of the relationships we have with the people closest to us have changed because they don't know how to deal with us... dealing with this. And that's okay. I am trying my best to be understanding of where they are, and the life experience they have to work with. It doesn't make it hurt any less. I can only hope that when their darkest hour comes, and it certainly will, that they have not made things so difficult for themselves that they are alone in that moment.
I am so grateful to all those who have stood by us, strengthened us and not judged us. We are so glad to know who we can count on and who we can't. I think we have come to the point in our story where we now know who to pull in, and who to leave out. I'm totally okay with that. A few months ago, contemplating letting go of people would have sent me into a depression for sure. I would have wrestled with the anxiety of not being favored by some. I would have lost a lot of sleep over how someone else feels I am living my life. But today is whole different story. I sleep perfectly fine, when Scott can sleep with me, thank you very much!
Today, I realize that there is only One who can understand the true suffering that comes in this life and in all the forms suffering takes. I can suffer and be miserable, or I can realize that all of this, and every kind of suffering man can do in this world...has already been suffered and "let it go." Why waste whatever precious time we have here, to live this life, on needless suffering? It seems we can "get busy living or get busy dying" and those really are the only two choices to be made.
Scott is choosing to live. I am choosing to live. Those that want to be a part of that, are welcome. Those that don't, we bid you farewell. We love everyone. Whether you love us back, is not the point. We appreciate all the prayers, the kind deeds, the thoughts, and well wishes we have received. We also appreciate all the relationships we have in our lives collectively and individually. Every one of our relationships have changed. Even our marriage and the relationship with our children has changed. For better or worse, these experiences continue to teach us lessons we need to know to become better, stronger, and more hopeful people, more willing to be compassionate and understanding of others.
We are quite literally imperfect people trying to live the best life we can, all things considered,while we still have the chance. We won't please everyone. Everyone will not please us. That has never been our expectation. We started this journey with a death sentence. We were devastated. We had to literally hear that, and pick up and keep going. How this turns out, is not up to us. But how well we survive...well, that's our choice.
I miss him. And he's here. It makes no sense. It's hard and I hate it. He hates it. We have come to a place where we realize more than ever, that we are not in control of what is happening now. We can try to fight it, but there is no winning that fight, because it isn't up to us. We can't make it like it was. Too many factors are different. What we have to do now, is work on making this reality work better for us. It's work. No way around it.
In an earlier post, I mentioned this article The Things I Wish I Were Told When I Was Diagnosed With Cancer. I have found, that although we are not sure if we are facing cancer or not at this point, every single one of the things Jeff points out in his article is true for us.
Every relationship we have with others has changed, it's true. Some relationships have been reaffirmed. Some have gotten stronger. We have built new relationships with people. Sadly, some of our connections have deteriorated. A few people have shown us their worst. I'm not sure why exactly. I do know we are different as a result of what has happened here. This whole experience has changed us. That has to be expected I think. What was unexpected, is that some of the people we thought were the closest to us, are the very people who have turned away and or brought more sorrow and grief.
Is it intentional? Probably not. Or Maybe it is...I'm not sure. I do know that all we can do is put these new relationships, or lack thereof, into perspective and make a decision about how to move on.
I was sitting in church visiting with a dear woman, whom I've gotten to know a little over the past year. She was asking how I am doing with everything. I said to her things seem to be hard right now, but that I don't have a choice except to survive it well. She smiled and sweetly replied, "Oh... but my dear, you do have a choice." What this wonderful spirit pointed out to me, is something I already know. I don't have to be miserable, sorry, or negative. I do have a choice about how I feel and react. I can choose to survive it well...or not.
Some people can be downright mean, vicious or just plain nasty. Some assume that because I'm not a total mess every day, that everything is fine and we don't need any physical or emotional help. So also wrongly assume that we are above the sort of thing a medical fund was set up for. I have also been told that no one will know to look at me that anything is wrong. Hummmm. Is that a compliment?
I always think it's my fault when others react to me in a negative way and I do know why. But even being aware doesn't instantly take away the sting from that initial feeling of thinking I am somehow responsible for the way other people treat me or my family. We have had many hard, bitter lessons to learn throughout this journey. Just when I think I have conquered and over come the most difficult, another, even more formidable obstacle appears to try and steal away any hope I might have left.Sometimes those things are mere circumstances. Other times, those seemingly insurmountable obstacles are the people we love the most.
Fear is real. Anger is part of the journey. I have accepted that. I just don't want to live in it. I try to recognize the fear and the anger for what it is and understand it's okay to be off balance when the unknown is presented. I just don't want to make decisions based on that fear or out of anger. I try to decide things based on what feels good and right to me, knowing full well that may not be good and right for anyone else. Even confident, well adjusted people, face fear and get really angry, at some point in their lives. This situation forced us to face our greatest and feel angry about a lot of things. It was the first time, I have ever seen Scott truly scared of anything, and that scared me too.
It wasn't fear of dying. This fear was not for himself. One fear was that he would leave us behind and not be able to take care of us the way he wanted. Another fear was that his children, all of them, would never truly know him or how much he loves and cares for each one. Yet another fear, was knowing he would have no choice in leaving and the damage that might do to all of us. He never thought in a million years anything like this would be happening to him and he didn't plan for it. His greatest fear was that he would be leaving behind a mess for me to deal with without him and as it turns out that was exactly what I was afraid too. Not because I wouldn't have him. But because I knew there were certain people I could no longer count on to be there for me in his place.
The fact is, we will both die someday. Hopefully not too soon. But if we do, we are better prepared for such a thing. Some of the relationships we have with the people closest to us have changed because they don't know how to deal with us... dealing with this. And that's okay. I am trying my best to be understanding of where they are, and the life experience they have to work with. It doesn't make it hurt any less. I can only hope that when their darkest hour comes, and it certainly will, that they have not made things so difficult for themselves that they are alone in that moment.
I am so grateful to all those who have stood by us, strengthened us and not judged us. We are so glad to know who we can count on and who we can't. I think we have come to the point in our story where we now know who to pull in, and who to leave out. I'm totally okay with that. A few months ago, contemplating letting go of people would have sent me into a depression for sure. I would have wrestled with the anxiety of not being favored by some. I would have lost a lot of sleep over how someone else feels I am living my life. But today is whole different story. I sleep perfectly fine, when Scott can sleep with me, thank you very much!
Today, I realize that there is only One who can understand the true suffering that comes in this life and in all the forms suffering takes. I can suffer and be miserable, or I can realize that all of this, and every kind of suffering man can do in this world...has already been suffered and "let it go." Why waste whatever precious time we have here, to live this life, on needless suffering? It seems we can "get busy living or get busy dying" and those really are the only two choices to be made.
Scott is choosing to live. I am choosing to live. Those that want to be a part of that, are welcome. Those that don't, we bid you farewell. We love everyone. Whether you love us back, is not the point. We appreciate all the prayers, the kind deeds, the thoughts, and well wishes we have received. We also appreciate all the relationships we have in our lives collectively and individually. Every one of our relationships have changed. Even our marriage and the relationship with our children has changed. For better or worse, these experiences continue to teach us lessons we need to know to become better, stronger, and more hopeful people, more willing to be compassionate and understanding of others.
We are quite literally imperfect people trying to live the best life we can, all things considered,while we still have the chance. We won't please everyone. Everyone will not please us. That has never been our expectation. We started this journey with a death sentence. We were devastated. We had to literally hear that, and pick up and keep going. How this turns out, is not up to us. But how well we survive...well, that's our choice.
Saturday, April 12, 2014
It's Not All Butterflies and Rainbows
I've heard the deep sighs and felt the eyes roll from here. When those of you reading this are going through something tragic, even horrific, and think something along the lines of, "That's all well and good for you! You've got some better news. You aren't going through what (we) I am going through. You have no idea what you're talking about. Life is not that easy for me."
I have not been exactly where anyone else is or has been. I cannot know personally, every thought or feeling that someone else has. I am not saying it's easy. I can, however, have empathy for where someone else might be. I can relate to some of the things others are feeling or going through. Not because I have lived it exactly, but because I am a compassionate person, with full knowledge of what it feels like for me to have been through the things I have been through. I could choose to write about the darkness and difficulty of it all. However, that does not serve me or my purpose to dwell on those things. Can I relate to the evil in the world? No. Have I experienced it, and the extreme sadness it had caused in my own life and in the lives of those I love? Yes.
It's not all butterflies and rainbows in my world. I sure wish it were. I'm definitely one of those girls whose first crayon drawings were made up of colorful creations where only happy, pretty things and people I loved existed. I tried my best to capture the unicorns and sunshine, along with the flowers and happy faces that roamed free in my imagination because I realized much too soon, that most of these things did not really exist in my life unless I insist on them being here.
Someone said to me the other day that my blog doesn't talk much about Scott or how he is doing. I thought about that for a long time. At first, I took it personally that my message wasn't being received. Then, I felt offended at the perceived criticism. But after a minute of that, I knew that none of that mattered to me. If I were that same 6 year old with her crayons, ( and I am) I would have drawn a blue sky, some white fluffy clouds, a rainbow in those clouds, and a bright sun in the corner of the page. I would have drawn myself, and my friend holding hands, standing on green grass, with little flowers popping up. I would have drawn a tree, with a bright green top and a present between the two of us.
This picture would have brought me a lot of joy. I would have proudly displayed it on my fridge with a magnet until I could affectionately give it to my friend. I would have felt accomplished and good about myself. All worthy things for anyone to feel.
That's what this blog represents to me. I have had my share of critics who read my writing, the same way they would critique my drawing and say, There is no depth, the angle isn't right. It's a feeble attempt. You could have done this or that. You should have...blah....blah...blah.
I really hate it when people "should" all over me. A very wise friend gave me that one a few years ago. it means the same as the expletive, but has a kinder tone :) Anytime someone tells me, however well meaning it might be, what I should or should not be doing, I say in my mind, "don't should on me!" This reminder helps put things into perspective and I can move out of negative thinking and into action for myself. This is still very much a work in progress, however. I am still learning to trust myself and my instincts and not let people should on me. Although it happens, my response is quite different than it used to be.
I turned a corner that February evening, when I knew something was wrong with Scott. I was forced to take a stand, and literally save his life. I have been forced to take action like that before. And each time, I come to understand that I am capable, strong and willing to do what is necessary and right. Even in the midst of crisis. These experiences have taught me to trust myself, even when others don't.
I have also learned that what is, is. It doesn't matter what anyone else thinks it "should" be like. I can't change what is. I can do my best to come out better than when I went in. Is it always possible in every single situation or scenario? I don't know, but I would guess that 99.9% of time it is possible to come out better than we went in if we are prepared to do the work necessary to make it so.
It's not about being right. For me the lesson is about knowing there is a reason we have instincts and intuition. There is a reason we have those moments when we think thoughts that may not be our own and we need to be able to hear, listen, trust and follow. It's the DOING that brings us closer to where we want to be.
This blog isn't about one persons health. It started out as way for me to keep those that were interested informed about Scott's condition because I didn't want to text, or email, or call hundreds of people. I didn't want to be responsible for leaving anyone out by mistake. I used this media as a way to accomplish that kind of communication, but it soon began to take on a whole new purpose. Not just for me, but for many reading along with me.
Scott is doing well. I am doing well. Our kids are doing well. We have each other and we are glad to all be here, right now. Our eyes and our hearts have been opened to changes we have all been forced, and asked to make. It's not easy. It's not what any of us wanted. We thought we were all just fine, going along as we were. But it turns out, we all had some big things to learn and we will continue to have opportunities to grow from this. We have a choice to survive well, or be victims or our circumstance. I am choosing, and I think I can speak for the rest of us, Scott included... that we are surviving well.
Does that mean we no longer have hard times, bad days, tough challenges to face and the daily grind of life goes away? Heck NO! All it means is that we continue to invite, search out, and accept hope for what it is. We all need it.
If you don't have a 6 year old to draw for you, I have here a picture you can print out and pin up somewhere you can see it. It doesn't make everything you are dealing with go away, but it does bring a smile and offers some innocent hope that things will not always be this way.
Picture this... a friend is giving you a gift on a warm sunny day, with butterflies and rainbows.
The gift is hope.
I have not been exactly where anyone else is or has been. I cannot know personally, every thought or feeling that someone else has. I am not saying it's easy. I can, however, have empathy for where someone else might be. I can relate to some of the things others are feeling or going through. Not because I have lived it exactly, but because I am a compassionate person, with full knowledge of what it feels like for me to have been through the things I have been through. I could choose to write about the darkness and difficulty of it all. However, that does not serve me or my purpose to dwell on those things. Can I relate to the evil in the world? No. Have I experienced it, and the extreme sadness it had caused in my own life and in the lives of those I love? Yes.
It's not all butterflies and rainbows in my world. I sure wish it were. I'm definitely one of those girls whose first crayon drawings were made up of colorful creations where only happy, pretty things and people I loved existed. I tried my best to capture the unicorns and sunshine, along with the flowers and happy faces that roamed free in my imagination because I realized much too soon, that most of these things did not really exist in my life unless I insist on them being here.
Someone said to me the other day that my blog doesn't talk much about Scott or how he is doing. I thought about that for a long time. At first, I took it personally that my message wasn't being received. Then, I felt offended at the perceived criticism. But after a minute of that, I knew that none of that mattered to me. If I were that same 6 year old with her crayons, ( and I am) I would have drawn a blue sky, some white fluffy clouds, a rainbow in those clouds, and a bright sun in the corner of the page. I would have drawn myself, and my friend holding hands, standing on green grass, with little flowers popping up. I would have drawn a tree, with a bright green top and a present between the two of us.
This picture would have brought me a lot of joy. I would have proudly displayed it on my fridge with a magnet until I could affectionately give it to my friend. I would have felt accomplished and good about myself. All worthy things for anyone to feel.
That's what this blog represents to me. I have had my share of critics who read my writing, the same way they would critique my drawing and say, There is no depth, the angle isn't right. It's a feeble attempt. You could have done this or that. You should have...blah....blah...blah.
I really hate it when people "should" all over me. A very wise friend gave me that one a few years ago. it means the same as the expletive, but has a kinder tone :) Anytime someone tells me, however well meaning it might be, what I should or should not be doing, I say in my mind, "don't should on me!" This reminder helps put things into perspective and I can move out of negative thinking and into action for myself. This is still very much a work in progress, however. I am still learning to trust myself and my instincts and not let people should on me. Although it happens, my response is quite different than it used to be.
I turned a corner that February evening, when I knew something was wrong with Scott. I was forced to take a stand, and literally save his life. I have been forced to take action like that before. And each time, I come to understand that I am capable, strong and willing to do what is necessary and right. Even in the midst of crisis. These experiences have taught me to trust myself, even when others don't.
I have also learned that what is, is. It doesn't matter what anyone else thinks it "should" be like. I can't change what is. I can do my best to come out better than when I went in. Is it always possible in every single situation or scenario? I don't know, but I would guess that 99.9% of time it is possible to come out better than we went in if we are prepared to do the work necessary to make it so.
It's not about being right. For me the lesson is about knowing there is a reason we have instincts and intuition. There is a reason we have those moments when we think thoughts that may not be our own and we need to be able to hear, listen, trust and follow. It's the DOING that brings us closer to where we want to be.
This blog isn't about one persons health. It started out as way for me to keep those that were interested informed about Scott's condition because I didn't want to text, or email, or call hundreds of people. I didn't want to be responsible for leaving anyone out by mistake. I used this media as a way to accomplish that kind of communication, but it soon began to take on a whole new purpose. Not just for me, but for many reading along with me.
Scott is doing well. I am doing well. Our kids are doing well. We have each other and we are glad to all be here, right now. Our eyes and our hearts have been opened to changes we have all been forced, and asked to make. It's not easy. It's not what any of us wanted. We thought we were all just fine, going along as we were. But it turns out, we all had some big things to learn and we will continue to have opportunities to grow from this. We have a choice to survive well, or be victims or our circumstance. I am choosing, and I think I can speak for the rest of us, Scott included... that we are surviving well.
Does that mean we no longer have hard times, bad days, tough challenges to face and the daily grind of life goes away? Heck NO! All it means is that we continue to invite, search out, and accept hope for what it is. We all need it.
If you don't have a 6 year old to draw for you, I have here a picture you can print out and pin up somewhere you can see it. It doesn't make everything you are dealing with go away, but it does bring a smile and offers some innocent hope that things will not always be this way.
Picture this... a friend is giving you a gift on a warm sunny day, with butterflies and rainbows.
Tuesday, April 8, 2014
The Harvest
Hunting is continual. Each part has it's time and place. We are in
the harvest now. We found the hope we needed for this moment and are
devouring the parts we need today, and storing up the rest for use at a
later time. We've found enough to get us through this season, until the
next. We don't know when the next season will be exactly, but we know it
will come and we will need to be prepared.
One way my hunter prepares is by first taking his camo out of the bag and hanging it outside in a pine tree. He says that's to get the scent of humans off of it and to let it take on the scent of the out doors. How often do we do that with our thoughts and emotions? This emotional camo is something we need. But how do we use it? Do we pull it straight on out of the bag smelling of fear and frustration? Or do we keep them safely guarded away where no one can see or hurt them, only to have them jaded and unable to relate to others when needed?
Camo has a purpose in hunting. It hides the hunter so he can get close enough to take his prey. Emotional camo is required when we don't yet understand for ourselves how to act or react in a new situation. We may need to put on a cloak of happiness, love, honesty, comfort...whatever it is, so that we can get close enough to hope to grab it up and take it when we need it, instead of fending it off with our fear and negativity.
It is a very deliberate action that doesn't just happen on it's own. We have to be aware that getting our emotions out, and helping them to air, is only part of it. We then have to be willing to put them on and wear them once they've been changed. If we simply keep hanging them out, nothings happens. If we take them out and then put them all back, we don't get what we need.
I prepared my emotional camo by letting my feelings out and sharing them here with others. Not because I wanted kudos, but because it helped me put into perspective what I was really looking for. Had I not took that camo out of the bag and let it take on the right emotions, I could have gone off in whole other direction that would have led me away from where I wanted to be. I was able to get the scent of fear and anger off, and take in a new sense of acceptance and support.
I would not have been able to do this alone, ever. Not because I didn't want to, but because I simply didn't yet know how to accept the help others have offered. I'm learning as I go and it's okay to do that. I've been able to cast off some of my fear of the unknown future and let in the present. With that came a whole lot of people who reached out to express their love and support. I would not have known or felt the comfort that came, had I not been able to express myself appropriately.
As I continue to search my feelings and share my thoughts, things come to me that I have always known. I am loved. I am valued. I am strong enough, good enough. I have courage. I can conquer my fears. I know each soul has purpose and is worth more than I can imagine to the One who created us. I am not perfect. There is much more to learn than I can ever possibly learn on my own. I need others to help me along the way.
I seem to forget these things over and over and have to be reminded over and over. My humanness gets in the way of perfection. Someone with much greater knowledge than I, knew it would be this way for everyone. Hope is not something we create. It just is. It's an eternal truth, just like love. Here for anyone who knows how to find it and use it.
My hunter doesn't create the animals he hunts. They exist outside of him and in spite of him. It is the same with hope. It was created by the Source of All and will continue to exist in spite of our inability to hang on to it. Just the way my hunter has to keep finding new ways to hunt and I have to keep finding new ways to hope. Life is ever changing. It will not stop for him or for me.
I am not sure exactly how any of this is going to play out for us. I am just beginning to understand hope has always lived here. The harvest is the shortest time of all in hunting. We need to enjoy it while it lasts, and begin to prepare the way for the next season to be successful. The work of hope is never ending if you want to have it when you need it.
One way my hunter prepares is by first taking his camo out of the bag and hanging it outside in a pine tree. He says that's to get the scent of humans off of it and to let it take on the scent of the out doors. How often do we do that with our thoughts and emotions? This emotional camo is something we need. But how do we use it? Do we pull it straight on out of the bag smelling of fear and frustration? Or do we keep them safely guarded away where no one can see or hurt them, only to have them jaded and unable to relate to others when needed?
Camo has a purpose in hunting. It hides the hunter so he can get close enough to take his prey. Emotional camo is required when we don't yet understand for ourselves how to act or react in a new situation. We may need to put on a cloak of happiness, love, honesty, comfort...whatever it is, so that we can get close enough to hope to grab it up and take it when we need it, instead of fending it off with our fear and negativity.
It is a very deliberate action that doesn't just happen on it's own. We have to be aware that getting our emotions out, and helping them to air, is only part of it. We then have to be willing to put them on and wear them once they've been changed. If we simply keep hanging them out, nothings happens. If we take them out and then put them all back, we don't get what we need.
I prepared my emotional camo by letting my feelings out and sharing them here with others. Not because I wanted kudos, but because it helped me put into perspective what I was really looking for. Had I not took that camo out of the bag and let it take on the right emotions, I could have gone off in whole other direction that would have led me away from where I wanted to be. I was able to get the scent of fear and anger off, and take in a new sense of acceptance and support.
I would not have been able to do this alone, ever. Not because I didn't want to, but because I simply didn't yet know how to accept the help others have offered. I'm learning as I go and it's okay to do that. I've been able to cast off some of my fear of the unknown future and let in the present. With that came a whole lot of people who reached out to express their love and support. I would not have known or felt the comfort that came, had I not been able to express myself appropriately.
As I continue to search my feelings and share my thoughts, things come to me that I have always known. I am loved. I am valued. I am strong enough, good enough. I have courage. I can conquer my fears. I know each soul has purpose and is worth more than I can imagine to the One who created us. I am not perfect. There is much more to learn than I can ever possibly learn on my own. I need others to help me along the way.
I seem to forget these things over and over and have to be reminded over and over. My humanness gets in the way of perfection. Someone with much greater knowledge than I, knew it would be this way for everyone. Hope is not something we create. It just is. It's an eternal truth, just like love. Here for anyone who knows how to find it and use it.
My hunter doesn't create the animals he hunts. They exist outside of him and in spite of him. It is the same with hope. It was created by the Source of All and will continue to exist in spite of our inability to hang on to it. Just the way my hunter has to keep finding new ways to hunt and I have to keep finding new ways to hope. Life is ever changing. It will not stop for him or for me.
I am not sure exactly how any of this is going to play out for us. I am just beginning to understand hope has always lived here. The harvest is the shortest time of all in hunting. We need to enjoy it while it lasts, and begin to prepare the way for the next season to be successful. The work of hope is never ending if you want to have it when you need it.
Monday, April 7, 2014
The Gift of Adversity
People keep telling me I should write a book. I don't know if I should or shouldn't. I do know that there are a lot of people on the hunt just like me, searching for hope and not quite sure if it's there for them. I have heard many accounts of others who are struggling with health issues, family problems, death of a loved one, financial problems, and general instability and unhappiness in their lives. I used to wish I had a magic wand to take all the trouble away from the world and specifically anyone that I love. But that would not serve the purpose we are here in this life to fulfill.
If everything were easy, we would never know how to overcome the difficulties presented to us. I think of children who must learn to eat, roll over, sit up, crawl and then walk. As a parent, I remember wanting to help my children along. I could have easily let them continue to drink milk, because meals don't get easier than that! I could have easily held them forever... because you can never get enough of that good baby smell. I could have continued to help them along, take away all the challenges and made it very easy on those babies of mine. It did seem easier at the time, to do it all.
However, my short sightedness would have hindered my children in the long run. I would have inadvertently taken from them the challenges they needed to learn and to grow. They would have never become independent. Instead they would have continued to require my assistance with every part of daily life.
Think about that for just a moment. Would that have really been easier for me? Easier for the child? Only easier in the short term. But as time goes on, life would become dreadfully difficult for both child and parent, if everything that was hard is taken away continually. Love would not grow the way it has over the years. Discontent and bitterness for a burden placed by doing everything for everyone, would certainly overshadow and drown out any good that might come along. I can see myself and my child absolutely miserable and completely unable to enjoy the things in life which come from growing and moving on. There certainly would be no more children!
I wanted desperately to take this burden from Scott. I wanted desperately to take it from myself and my kids. But had I done that, somehow, I would have taken away the very thing we needed at the time. I would have taken away all that we have become and learned from this experience so far. I would have hindered our emotional and spiritual growth. That would not have been better for any of us in the long run.
I did feel guilty for thinking of letting myself be happy in the midst of such dark news. The same way I once felt guilty for letting my baby cry, so he could learn to self sooth. The same way I felt guilty for letting my baby fall, when learning to walk on his own. I felt like I was betraying my husband in a way, if I could find happiness in spite of all the sadness surrounding me. I had moments that I could actually see myself working through the stages of grief, and coming out okay. Not because I wanted him gone, or anything bad to happen. Of course not that. I have been through many, many hard times in life before. I have been to the depths of despair and felt like no one else could possibly understand my pain and suffering or love me unconditionally.
Because I made it through all that before, there was a reason for me to think that maybe I would be able to make it through this one too. Not knowing if it was okay to acknowledge hope, was causing me more grief. As I wrestled with these feelings, I new I had a decision to make. I needed to be able to give myself permission to be secure even though doing so made me feel guilty. I felt like the acceptable answer, other people were looking for, was for me to fall completely apart and be a total mess. That just didn't feel right. I had to keep going. I did give myself permission to be okay, and lived with the guilt for a minute. I knew people might not understand, but that was alright. I wasn't okay with the situation, I was okay with myself and there is a HUGE difference.
Going through other very difficult times, taught me that there were others who could understand and offer support for me. How would I have known that, unless I had been there? How could I recognize when others were reaching out to me unless I knew what to look for? Not only that, how would I be able to share with anyone else these tender feelings that only come through trial? I needed those other hard times in my life that led up to this point, to help me gain the strength to know when hope was there for me and my family and to have the courage to embrace it when the world seems to teach us not to. I needed to understand loneliness, sorrow, rejection, hurt, anger, mistrust and all those negative feelings, so that I could learn to fight them off and be strong enough to withstand the pressures life is throwing at me now.
Even if I had wanted them too, no one else could do this for me. The same way Scott had to deal with facing death on his own, or the way my babies had to learn to walk. I could not do it for them. I had to be strong enough to let them go and do it on their own. I didn't know I had it in me, until I was faced with it. That doesn't mean I wanted to let them go at all. I just had to face my fear and live in the truth of that moment with an understanding that I was not in charge and could not control the outcome. The only thing I can control is me. I can't stop bad things from happening. But I can stop them from destroying my confidence in who I am and what I am here to do.
I have had to face again some demons from my past which I thought were long buried, since the beginning of this whole thing. I have had to search my soul over and over again for purpose, for reasons, and for the ability to continue moving forward when every part of my being just wanted to freeze and never take another step. Watching Scott try to do that, and reflecting back on teaching my children to be independent, I realized that isn't the way it's meant to be.
I have to find a way to put all things in their place and take my own advice. Today, we are all okay. Today we are here together, and today we have much to do that isn't tumor related. Today, is today and not yesterday or tomorrow. The present is what we have right now. I read somewhere... that's why it's called a gift.
If everything were easy, we would never know how to overcome the difficulties presented to us. I think of children who must learn to eat, roll over, sit up, crawl and then walk. As a parent, I remember wanting to help my children along. I could have easily let them continue to drink milk, because meals don't get easier than that! I could have easily held them forever... because you can never get enough of that good baby smell. I could have continued to help them along, take away all the challenges and made it very easy on those babies of mine. It did seem easier at the time, to do it all.
However, my short sightedness would have hindered my children in the long run. I would have inadvertently taken from them the challenges they needed to learn and to grow. They would have never become independent. Instead they would have continued to require my assistance with every part of daily life.
Think about that for just a moment. Would that have really been easier for me? Easier for the child? Only easier in the short term. But as time goes on, life would become dreadfully difficult for both child and parent, if everything that was hard is taken away continually. Love would not grow the way it has over the years. Discontent and bitterness for a burden placed by doing everything for everyone, would certainly overshadow and drown out any good that might come along. I can see myself and my child absolutely miserable and completely unable to enjoy the things in life which come from growing and moving on. There certainly would be no more children!
I wanted desperately to take this burden from Scott. I wanted desperately to take it from myself and my kids. But had I done that, somehow, I would have taken away the very thing we needed at the time. I would have taken away all that we have become and learned from this experience so far. I would have hindered our emotional and spiritual growth. That would not have been better for any of us in the long run.
I did feel guilty for thinking of letting myself be happy in the midst of such dark news. The same way I once felt guilty for letting my baby cry, so he could learn to self sooth. The same way I felt guilty for letting my baby fall, when learning to walk on his own. I felt like I was betraying my husband in a way, if I could find happiness in spite of all the sadness surrounding me. I had moments that I could actually see myself working through the stages of grief, and coming out okay. Not because I wanted him gone, or anything bad to happen. Of course not that. I have been through many, many hard times in life before. I have been to the depths of despair and felt like no one else could possibly understand my pain and suffering or love me unconditionally.
Because I made it through all that before, there was a reason for me to think that maybe I would be able to make it through this one too. Not knowing if it was okay to acknowledge hope, was causing me more grief. As I wrestled with these feelings, I new I had a decision to make. I needed to be able to give myself permission to be secure even though doing so made me feel guilty. I felt like the acceptable answer, other people were looking for, was for me to fall completely apart and be a total mess. That just didn't feel right. I had to keep going. I did give myself permission to be okay, and lived with the guilt for a minute. I knew people might not understand, but that was alright. I wasn't okay with the situation, I was okay with myself and there is a HUGE difference.
Going through other very difficult times, taught me that there were others who could understand and offer support for me. How would I have known that, unless I had been there? How could I recognize when others were reaching out to me unless I knew what to look for? Not only that, how would I be able to share with anyone else these tender feelings that only come through trial? I needed those other hard times in my life that led up to this point, to help me gain the strength to know when hope was there for me and my family and to have the courage to embrace it when the world seems to teach us not to. I needed to understand loneliness, sorrow, rejection, hurt, anger, mistrust and all those negative feelings, so that I could learn to fight them off and be strong enough to withstand the pressures life is throwing at me now.
Even if I had wanted them too, no one else could do this for me. The same way Scott had to deal with facing death on his own, or the way my babies had to learn to walk. I could not do it for them. I had to be strong enough to let them go and do it on their own. I didn't know I had it in me, until I was faced with it. That doesn't mean I wanted to let them go at all. I just had to face my fear and live in the truth of that moment with an understanding that I was not in charge and could not control the outcome. The only thing I can control is me. I can't stop bad things from happening. But I can stop them from destroying my confidence in who I am and what I am here to do.
I have had to face again some demons from my past which I thought were long buried, since the beginning of this whole thing. I have had to search my soul over and over again for purpose, for reasons, and for the ability to continue moving forward when every part of my being just wanted to freeze and never take another step. Watching Scott try to do that, and reflecting back on teaching my children to be independent, I realized that isn't the way it's meant to be.
I have to find a way to put all things in their place and take my own advice. Today, we are all okay. Today we are here together, and today we have much to do that isn't tumor related. Today, is today and not yesterday or tomorrow. The present is what we have right now. I read somewhere... that's why it's called a gift.
Friday, April 4, 2014
More Questions Than Answers
Yesterday we made the trek to Denver to see the neurologist again. Scott had another MRI done on Wednesday. The purpose was to compare the new scan to the previous and see what has changed. We were not nervous at all this time. We knew there was something different, or he would have had surgery last Friday as planned. So we were eager to hear more about what was new.
Dr. Lillehei came into the room and Scott lit up. He really likes his doctor. It's very hard not too, he is a great guy. Very engaging and personable. He just has a way about him we both like and trust. This is exactly what you want in a neurosurgeon, right?
He pulled up all the scans on the screen for us to see. There was the original MRI done on Feb 13. Then the CT done last Friday the 28th, along with the MRI from Wednesday April 3rd. As we looked, the doctor explained what he was looking at and what he expected to see. Scott kept looking to see if it was really his images we were looking at. It was.
The original pictures did not show the same things as the 2 newer ones. The MRI gives a much sharper image than the CT, but the CT showed a white spot that wasn't showing up on MRI. That was the game changer. That little spot indicates calcium, which is not normal in the brain. Calcium takes a long time to build. The doctor said it takes "at least 10 years" for tissue to calcify. But he was puzzled as to why it was not seen on the first scan. He also said something else that gave us the greatest hope of all.
"This tumor is evolving. Tumors typically grow, and worsen. They get bigger, not smaller." Apparently Scott's tumor, which still may not be tumor at all, is changing. It hasn't gotten bigger. In fact the area of contrast, the part that indicates tumor tissue, has reduced in size. "We don't see tumors do this. Once a tumor starts to grow, it doesn't just stop growing and go away on it's own. I still think we are looking at a tumor, but we need more time to see what it's doing."
Science cannot explain divine intervention, and to see it first hand is really something. We could say that the position was off on the first MRI and that's why the calcium didn't show up. We can say, it's not a tumor at all and that's why it's changing. We can justify it all this way and that. But what it comes down to for me, is that we have witnessed a miracle. Not just in the way the doctor has changed his mind about what we are dealing with here, but in the way our hearts have changed and turned toward something totally different.
We know we are not in charge of this existence. We get to choose while we are here, how it goes for the most part. But even then, there are just so many things beyond our control. We don't get to choose how and when we are born, to what families, in what part of the world. Some of life's circumstances are decided for us. What then? The choices then become based on what we know, and how we feel. Some people can change that, and some cannot. People choose to live the best life we can and do their best with what they have to work with, or not.
I know others whose circumstances harden their spirits and force themselves to live in bitterness or blame everyone and everything for the way their life has turned out. It's easy to give up on hope and say, "Life sucks." For the most part, life is hard, and rarely turns out the way we imagine it should. But we can, if we want to, find the good from moment to moment and build on it, and focus on it. What we focus on is what will grow. Focus on good, we will find more and more good in all things. Focus on the bad, and well....you will end up only seeing the negative in everyone and everything, because that is what you are looking for.
We find that hope is all around us now, because we are actively looking for it. In the same way the hunter knows his pray is all around. He is in their territory. He eats, sleeps and breathes with them, but not usually in plain sight. We are here, where hope lives. It's all around. In big things and in small. In things we can see and touch and those we cannot. The fear of the unknown is less suppressive now. I suppose it's because we have more understanding that we are not in total control and it's okay to go with it. Trust is about knowing that something or someone is there is help, and I know that now, more than ever which makes it far easier to let go and hope for the best.
There is a much larger picture for all of this that we may not ever get to see completely, or even come to understand fully. Right now, today, I know a few things. The man I have known for 16 years, died on Feb 10, 2014. A new man took his place on Feb 11. The angry, scared, frustrated man that woke up in the hospital and was treated for stroke, was not the same man I took in. Parts of him, returned, but parts of him did not. Feb 28, 2014 a brand new man was born. One full of love, hope and optimism.
I completely understand the term "born again." I realize it doesn't happen so drastically for everyone who feels born again. But going to the point of being told you are certainly going to die, well before your time, is something I can only imagine would give one cause to rethink their life to that point. And then to be saved. To be rescued from that death sentence. What sweet agony and relief. I imagine it is a new kind of birth. The kind you can remember. The kind that tells you, "You have a another chance."
None of us know how long we have to live. We are not promised tomorrow, no one is. When it's our time, it's our time and there is nothing any of us can do about that. Some are given knowledge before hand that time is limited. Others are just gone in an instant. I don't pretend to know what the purpose is for anyone. I only know that for us, having been through what we have, it has opened our eyes to the things in this life that are truly the most important. Scott is not the only one who has been given another chance. We all have.
Everyday we wake up, still alive, we each have the chance to be better than we were yesterday, no matter what our current circumstances are. Each of us get to choose to look for the hope that lives among us. We have the opportunity to prioritize the things that are most important and disregard the things that take us away from doing what we should for ourselves and those we love most. It doesn't have to come to a life or death situation for us to have the change of heart we need to be better than we were.
Start from here. Don't wait for a loved one to be taken. Don't wait for a better time or opportunity. We all have the chance, right now, in this very second to be "born again." Live the life you want. Be the person you know you need to be. Not for anyone else, but for yourself. Avoid the regret that comes from not doing what you can while you still have the ability to do it. It doesn't matter if it's one big change, or a thousand small changes you begin to make. What matters is to recognize change when it is needed, in whatever amount is required. And then DO IT!
Keep going. Keep looking up. The hunt is continual. You will find what you are looking for, if you work to do so. Don't give up. It's out there....
We have many more questions that won't be answered for quite some time. We have 8 weeks to wait for another MRI and doctor's visit. 2 more months of evolution to take place. Scott still can't return to work, he is restricted from many things his job requires. We are looking forward to seeing what all of this will mean. For now we are on this journey to begin again with what we now know about ourselves and each other. We have this opportunity to be better than we were before. We don't have any conclusive answers but they are out there...along with the hope that we can do this.
Dr. Lillehei came into the room and Scott lit up. He really likes his doctor. It's very hard not too, he is a great guy. Very engaging and personable. He just has a way about him we both like and trust. This is exactly what you want in a neurosurgeon, right?
He pulled up all the scans on the screen for us to see. There was the original MRI done on Feb 13. Then the CT done last Friday the 28th, along with the MRI from Wednesday April 3rd. As we looked, the doctor explained what he was looking at and what he expected to see. Scott kept looking to see if it was really his images we were looking at. It was.
The original pictures did not show the same things as the 2 newer ones. The MRI gives a much sharper image than the CT, but the CT showed a white spot that wasn't showing up on MRI. That was the game changer. That little spot indicates calcium, which is not normal in the brain. Calcium takes a long time to build. The doctor said it takes "at least 10 years" for tissue to calcify. But he was puzzled as to why it was not seen on the first scan. He also said something else that gave us the greatest hope of all.
"This tumor is evolving. Tumors typically grow, and worsen. They get bigger, not smaller." Apparently Scott's tumor, which still may not be tumor at all, is changing. It hasn't gotten bigger. In fact the area of contrast, the part that indicates tumor tissue, has reduced in size. "We don't see tumors do this. Once a tumor starts to grow, it doesn't just stop growing and go away on it's own. I still think we are looking at a tumor, but we need more time to see what it's doing."
Science cannot explain divine intervention, and to see it first hand is really something. We could say that the position was off on the first MRI and that's why the calcium didn't show up. We can say, it's not a tumor at all and that's why it's changing. We can justify it all this way and that. But what it comes down to for me, is that we have witnessed a miracle. Not just in the way the doctor has changed his mind about what we are dealing with here, but in the way our hearts have changed and turned toward something totally different.
We know we are not in charge of this existence. We get to choose while we are here, how it goes for the most part. But even then, there are just so many things beyond our control. We don't get to choose how and when we are born, to what families, in what part of the world. Some of life's circumstances are decided for us. What then? The choices then become based on what we know, and how we feel. Some people can change that, and some cannot. People choose to live the best life we can and do their best with what they have to work with, or not.
I know others whose circumstances harden their spirits and force themselves to live in bitterness or blame everyone and everything for the way their life has turned out. It's easy to give up on hope and say, "Life sucks." For the most part, life is hard, and rarely turns out the way we imagine it should. But we can, if we want to, find the good from moment to moment and build on it, and focus on it. What we focus on is what will grow. Focus on good, we will find more and more good in all things. Focus on the bad, and well....you will end up only seeing the negative in everyone and everything, because that is what you are looking for.
We find that hope is all around us now, because we are actively looking for it. In the same way the hunter knows his pray is all around. He is in their territory. He eats, sleeps and breathes with them, but not usually in plain sight. We are here, where hope lives. It's all around. In big things and in small. In things we can see and touch and those we cannot. The fear of the unknown is less suppressive now. I suppose it's because we have more understanding that we are not in total control and it's okay to go with it. Trust is about knowing that something or someone is there is help, and I know that now, more than ever which makes it far easier to let go and hope for the best.
There is a much larger picture for all of this that we may not ever get to see completely, or even come to understand fully. Right now, today, I know a few things. The man I have known for 16 years, died on Feb 10, 2014. A new man took his place on Feb 11. The angry, scared, frustrated man that woke up in the hospital and was treated for stroke, was not the same man I took in. Parts of him, returned, but parts of him did not. Feb 28, 2014 a brand new man was born. One full of love, hope and optimism.
I completely understand the term "born again." I realize it doesn't happen so drastically for everyone who feels born again. But going to the point of being told you are certainly going to die, well before your time, is something I can only imagine would give one cause to rethink their life to that point. And then to be saved. To be rescued from that death sentence. What sweet agony and relief. I imagine it is a new kind of birth. The kind you can remember. The kind that tells you, "You have a another chance."
None of us know how long we have to live. We are not promised tomorrow, no one is. When it's our time, it's our time and there is nothing any of us can do about that. Some are given knowledge before hand that time is limited. Others are just gone in an instant. I don't pretend to know what the purpose is for anyone. I only know that for us, having been through what we have, it has opened our eyes to the things in this life that are truly the most important. Scott is not the only one who has been given another chance. We all have.
Everyday we wake up, still alive, we each have the chance to be better than we were yesterday, no matter what our current circumstances are. Each of us get to choose to look for the hope that lives among us. We have the opportunity to prioritize the things that are most important and disregard the things that take us away from doing what we should for ourselves and those we love most. It doesn't have to come to a life or death situation for us to have the change of heart we need to be better than we were.
Start from here. Don't wait for a loved one to be taken. Don't wait for a better time or opportunity. We all have the chance, right now, in this very second to be "born again." Live the life you want. Be the person you know you need to be. Not for anyone else, but for yourself. Avoid the regret that comes from not doing what you can while you still have the ability to do it. It doesn't matter if it's one big change, or a thousand small changes you begin to make. What matters is to recognize change when it is needed, in whatever amount is required. And then DO IT!
Keep going. Keep looking up. The hunt is continual. You will find what you are looking for, if you work to do so. Don't give up. It's out there....
We have many more questions that won't be answered for quite some time. We have 8 weeks to wait for another MRI and doctor's visit. 2 more months of evolution to take place. Scott still can't return to work, he is restricted from many things his job requires. We are looking forward to seeing what all of this will mean. For now we are on this journey to begin again with what we now know about ourselves and each other. We have this opportunity to be better than we were before. We don't have any conclusive answers but they are out there...along with the hope that we can do this.
Wednesday, April 2, 2014
It's All About The Little Things
When I began this journey two months ago, I thought my life as I knew it was over. I thought my husband was going to die and none of us would be same again.
I was right, but not about the dying part. I will never be the same. The life I knew is over and we've started new. Was it by choice?
Yes and no.
I choose the way I endure hardship and adversity. I can choose to focus on all that's wrong, on what I don't have, how other people behave and create whatever drama or scenario that best suits any imperfection that is present. I've already lived that life. I've lived with negative people and those who do their best to bring me down. I can't survive in that atmosphere. I learned that at a very young age.
I don't want my legacy to my children and their children to be one of loneliness and heartache. We all deserve much better than that. I sure don't want to dwell on the "what if's" that may never come to be. I heard once that worrying about things that could happen, is the same as praying for things you don't want. Once I put it into that context, I knew I had to stop worrying about what if....and start praying for the idea that Scott would be spared this trial at this time and live up to his potential. I began praying also that I would be able to live up to my potential too.
Life is an entire collection of experiences both good and bad. We make choices moment to moment, about what we think, how we respond to, and how we feel about each experience. Happiness is a choice. Was I happy about the diagnosis. NO! Would I be happy to live this life without the father of my children, not at all. But I have found happiness in moments along the way despite the sadness of the diagnosis and the situation it created.
A lot of little things, add up to something big eventually. Did any one little thing make all the difference for us? No. But a thousand little things along the way did. Let me explain.
It was a little thing, but Scott was home the night of his first seizure. It seems like it wouldn't matter too much until you realize that he could have been driving across the state. He could have been a hundred feet up on a radio tower somewhere. He could have been hiking into a remote mountain site, alone in the middle of winter. He could have been alone in a hotel room with no one to help him.
While at the hospital the first time, we were surrounded by friends and family who came to help. I think that was a big thing personally. We also had people bring meals to the house and offer to help with kids and the dog.
We had an envelope of money donated by the great people that Scott works with. There was a little under $600 in there. It was a great eye opener as to how much people care. So many messages, texts and emails have come our way with expressions of love, hope and support. To say, "You're in our prayers" seems like a little thing, but when you hear it or see it hundreds of times, it turns into a huge amount of comfort.
Our children have been troopers through this whole thing so far. When stress and uncertainty could have ripped our family apart, our children stepped up and showed us how to be brave in the face of fear. They helped out with little things around the house. They took a little more care of themselves and didn't complain about it. Our children, in some ways had to grow up a bit before their time. And they did it without feeling sorry for themselves. They didn't ever make me feel that I wasn't doing a good job for them either. They were really supportive of anything that Scott needed. I am amazed at the wonderful human beings they truly are.
The little bits of hope we found along the way came in the form of Scott not having any symptoms except the two seizures he initially had on Feb. 10. There were no others. We kept thinking that there had to be something different going on for him because he was not deteriorating and not having any neurological problems at all.
When we talked to the doctor just before we left for vacation, he told us that it was good sign there were no other symptoms and reassured us that there was nothing Scott did or didn't do to make this happen. He also gave us reassurance that he was there for us and if there was anything to be done, he would certainly do it.
Little rays of sunshine came in the form of cards and letters that poured in from friends and family. We also gathered little moments to steal away and spend time together, just the two of us talking and getting to know more about each others hopes and fears. Scott spent a little more time with each child, talking, laughing, playing and giving them whatever bits of hope he could offer them at the time.
A lot of little things, add up to something big eventually. Did any one little thing make all the difference for us? No. But a thousand little things along the way did. Let me explain.
It was a little thing, but Scott was home the night of his first seizure. It seems like it wouldn't matter too much until you realize that he could have been driving across the state. He could have been a hundred feet up on a radio tower somewhere. He could have been hiking into a remote mountain site, alone in the middle of winter. He could have been alone in a hotel room with no one to help him.
While at the hospital the first time, we were surrounded by friends and family who came to help. I think that was a big thing personally. We also had people bring meals to the house and offer to help with kids and the dog.
We had an envelope of money donated by the great people that Scott works with. There was a little under $600 in there. It was a great eye opener as to how much people care. So many messages, texts and emails have come our way with expressions of love, hope and support. To say, "You're in our prayers" seems like a little thing, but when you hear it or see it hundreds of times, it turns into a huge amount of comfort.
Our children have been troopers through this whole thing so far. When stress and uncertainty could have ripped our family apart, our children stepped up and showed us how to be brave in the face of fear. They helped out with little things around the house. They took a little more care of themselves and didn't complain about it. Our children, in some ways had to grow up a bit before their time. And they did it without feeling sorry for themselves. They didn't ever make me feel that I wasn't doing a good job for them either. They were really supportive of anything that Scott needed. I am amazed at the wonderful human beings they truly are.
The little bits of hope we found along the way came in the form of Scott not having any symptoms except the two seizures he initially had on Feb. 10. There were no others. We kept thinking that there had to be something different going on for him because he was not deteriorating and not having any neurological problems at all.
When we talked to the doctor just before we left for vacation, he told us that it was good sign there were no other symptoms and reassured us that there was nothing Scott did or didn't do to make this happen. He also gave us reassurance that he was there for us and if there was anything to be done, he would certainly do it.
Little rays of sunshine came in the form of cards and letters that poured in from friends and family. We also gathered little moments to steal away and spend time together, just the two of us talking and getting to know more about each others hopes and fears. Scott spent a little more time with each child, talking, laughing, playing and giving them whatever bits of hope he could offer them at the time.
People from my business sent their support and helped out where and when they could. I even had clients who have many of their own struggles tell me not to worry about their families and focus on mine. The outpouring of love and support has been amazing. The really cool thing about it, is that it has largely come from people outside of our immediate family. It's the messages from total strangers that restored my faith in the world and let me know that good people exist all over.
Our neighbors and schools have been so helpful and understanding. The list of little things just goes on and on. I've often asked myself what we would have done had we been so alone in this trial. Then I remind myself that's a "what if " and I don't need to worry about that because it's not the way it is.
Conversations can seem like little things. They can also be so empowering and life changing. I am so grateful for the hundreds of conversations that over the course of this time, has helped me put so many things into perspective. I carried around a lot of guilt and unhappiness for decisions that I had no control over for most of my life. Feelings of inadequacy that shaped my existence has virtually disappeared.
We still have a long road ahead. Many more answers to find. There is still a tumor and the question of how our lives will be shaped by this fact. Will things change for us? Yes. Things change for everyone. Being able to recognize change for what it is and adapt is one of life's greatest blessings and challenges.
Keeping my eye on the little things, the sunshine, a hug from a little person, a note sealed with a kiss, a really great comedy, music....all these things bring happiness and tiny bits of hope moment to moment. One of the biggest lessons I had to learn came to me while comforting my 8 year old.
She was beside herself with fear and worried that she was going to lose her daddy. Crying herself to sleep was breaking my heart, because I knew her pain intimately and wanted desperately to take it from her. I went to her beside and knelt down along side her. With tears in her eyes, she said, "mom I don't know to stop being so scared. I can't stop crying." I sat there and held her close. Stroking her hair and hoping I could say something inspired but I just didn't know what.
After several minutes and silent prayers for help, I said confidently, "how is your dad today? He is good right? He is here. He is not sick, not gone." She looked at me with agreement in her sweet little face.
"Let's just think about today and not the rest. Let's just look at where we are right now, altogether and happy. Let's think about this moment right here and everything is okay, right now and that is all we need to think."
We hugged, wiped away the tears and breathed in a new sense of relief for not having to take on the whole of everything. We had each other, we still had our family. Everything was okay right then and that was enough. It was a little thing. But that along with the hundreds of others gave us the hope that things would continue to be alright.
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