To say I have struggled with this post is an understatement. I have added to it on and off for nearly two months. Some people may think why, we just want to know how Clayton is that should be simple enough. The thing is though that this blog was always more about me then it was about him. I needed an outlet. I need something to keep me grounded. During the most traumatic or infuriating moments in this whole process, I found that if I was thinking something I wouldn't write, then I need to not think it either. That is not to say that I have poured everything I have into this blog because I haven't. There has always been a lot that has stayed with me and me alone. But for the past two years, this blog was my way of forging a path through my son's cancer that didn't leave me completely bitter or in an ever-lasting pity party.
What I've done is found myself on this interesting ride. I have found myself not just fighting cancer, scoliosis, kidney disease and autism, but also figuring out what happiness really is. I cannot in words describe the satisfaction I feel for the lessons I have learned throughout this journey. The lessons I am most thankful for is for the lesson in happiness. I have watched people these past two years. I have watched friends, family, strangers and politicians. I found that there are some amazingly wonderful people out there that will defy your expectations every single time. If you have a good family, they will stick by you, thats what family is suppose to do right? Well, we've been lucky to have family like that. Family that has stuck by and supported us...take my mother for example, she walked away from a paying job because her grandchild came first; she found she couldn't support him how she wanted to and work, so she just walked away.
Friends are another story. You can think you have these really amazing friends, but when something like long term complications with your child happen, you really learn what kind of people they are. Because believe it or not, people get sick of the "little sick kid". YES. Not everyone, but there are those who rally behind you like you are a cause only until they tire of the attention you are getting or realize that your child lived. Yep. I just said that. Because there are a select group of people that help you because it makes them look good or feel good for a moment and then they realize that your kid is struggling, but isn't going anywhere and that would require more effort and more love than they originally wanted to put into the whole thing. Sounds horrible right? I think it is down right pathetic, but I thank God for the moments where I get to learn what people are really made of. Be them friends, acquaintances or strangers.
We have been so lucky with friends. My old friends live all over the country from Birmingham to Maine and Hawai, but not George's. His old school buddies pretty much all live around here. It is through them that we have had the most amazing system of support. They are a great group of guys and I never hear George talk to any of them without answering, "how is Clayton?" And for the friends that have wives or girlfriends, those ladies have been AMAZING! I would love to call everyone out and thank them, but I probably shouldn't do that here, so instead, I just hope they know how awesome they are. They have always been there and never forgotten the battles our son faces on a regular basis. To them our child was never a cause; he is a little boy who got dealt a bad hand and needs the love and support of as many people as he can get. Not to leave out the friends George has made through work as well who have been equally as awesome and supportive! I personally see them less often, but they have been wonderful to our family in so many ways. One of these friends even offered to let us drive his car to Texas because it got better gas mileage! We refused the generous offer, but it is just an small example of how supportive they have been. I do hope none of our friends ever gets offended if we don't socialize more. We...well, we are just tired all the time right now. It's been a long five years for us (especially the last two) and we don't mean to be recluses (particularly me) it is just very draining to have a child that needs so much. That is not a complaint, because I know how blessed I am, merely an explanation for our lack of socializing.
Then there are the families that get their kids involved. That means so much to me because by getting your kids involved you are helping to build a better future. Sounds like a dramatic statement, but it is unbelievably true. Everything we have been through has really shown me the importance of exposing children to these sometimes harsh realities. Doing so makes them stronger, kinder and more generous. Some of the most amazing people I have met on this journey are the siblings of or other children who are close to the kids suffering with different illnesses. These kids who are involved are some of the most amazing and most appreciative PEOPLE I have ever met. They love life more, they are more determined and ambitious in the right ways...they are just amazing kids...and they care which is the most important thing. So let your kid learn the sometimes harsh realities of the world. Let them know and love a sick child knowing the day might come when they cry because that child's life was lost. Encourage them to spend time with the children with learning disabilities because it is those children that will show them how to love in a way that nothing else on this earth can. Doing these simple things teaches kids love, tolerance and caring above all else and encourages them to be the future researchers or advocates that our world needs.
Unfortunately, with all of the good, comes the bad. It is the bad that caused my love for this blog to waiver. I tired of having a few people question my life based on the words on this blog. Why are they building a house when people are donating money to them? Why are they getting a new refrigerator? Why are they doing this or that blah, blah, blah...I got tired of being made to feel like I had to answer to people for the choices I was making because I don't. I answer to God just like everyone else and that is it. For some reason the people judging me didn't have the intelligence to realize that this blog is not a full representation of my life and that there are details of which they know nothing about. It's sad that when you have a sick child and good people try to help you that you then become a target for the bitter folks out there. We have done all we can to come out of this with our heads above water. We are now trying to sell our home and are building a 1,000 sq ft one bedroom house on free property. We are doing this because we know that we need to be in a financial situation where we can afford to take Clayton where he needs to go without relying on the generosity of others. We know that while our financial burdens and our dependence on medical help with Clayton will be a lifelong battle, we know that others forget. We also know this is our life made up of our choices and it is not anyone else's responsibility, but our own, so we are trying to better prepare ourselves for the future having learned the lessons we have now learned. I can assure you the idea that we will probably spend the rest of our lives poor because of paying for our son's medical needs is not ideal. But we love our child and chose to revolve our life around him and to jump through hoops to keep him here with us. He is so stinking amazing, we would be stupid not to do absolutely anything we could for him. So rather than struggling and sacrificing time with our son to make more, more, more to have the life we always thought we wanted/needed, we are adjusting our thinking and building a life based on what we have right now. We are building a life based on what we need over what we want...it's a process, but we are doing it. Our lives haven't stopped just because our son is dealing with cancer, kidney disease, severe scoliosis and autism. We still get sick and get flat tires, our AC and refrigerator still crap out, and when we try to do the right thing financially with our mortgage company, we still get bit in the butt because the system only helps those who have screwed up, not those trying to be responsible before it is "too late". So yes, we have spent money during the time when people gave to us, but Clayton's fund has always been his fund for his needs. Not for mine and not for George's. Oh and the couch? Simple...I worked my but off to graduate college, I got a job, my kid got cancer I was tired and exhausted and everywhere I turned something was covered in puke, poo or blood and damn it I deserved it. We deserved it...so we used birthday money, then financed it to pay $50 a month...it had nothing to do with Clayton's fund so kiss my butt you bugger for pestering me about it! We deserved a dang pick-me-up! And as for the twit who tried to cry foul because George and I took our son on two different weekend excursions in New York while up there for treatment... As I said before it was the WEEKEND not a weekday. That aside, I pity the fact that you appear to be not only a selfish person, but someone who sadly is jealous that a family struggling with childhood cancer had two awesome well deserved days of fun. But before this person goes thinking we had too much fun let me suggest they learn a thing or two about the difficulties of having a child with learning disabilities. Even trying to provide these children with fun can often be a struggle. Whatever is going on in your life should not be projected on others and it sounds as though you have personal issues you need to work on. I have come to realize just how horrible people treat each other and it is ridiculous!...and I don't want that nonsense and the folks dishing it out in my life. Sadly that means no more blog. I have too many things in my life that could bring me down. I refuse to let other people's negativity be one of them. So this is my goodbye...
What I've done is found myself on this interesting ride. I have found myself not just fighting cancer, scoliosis, kidney disease and autism, but also figuring out what happiness really is. I cannot in words describe the satisfaction I feel for the lessons I have learned throughout this journey. The lessons I am most thankful for is for the lesson in happiness. I have watched people these past two years. I have watched friends, family, strangers and politicians. I found that there are some amazingly wonderful people out there that will defy your expectations every single time. If you have a good family, they will stick by you, thats what family is suppose to do right? Well, we've been lucky to have family like that. Family that has stuck by and supported us...take my mother for example, she walked away from a paying job because her grandchild came first; she found she couldn't support him how she wanted to and work, so she just walked away.
Friends are another story. You can think you have these really amazing friends, but when something like long term complications with your child happen, you really learn what kind of people they are. Because believe it or not, people get sick of the "little sick kid". YES. Not everyone, but there are those who rally behind you like you are a cause only until they tire of the attention you are getting or realize that your child lived. Yep. I just said that. Because there are a select group of people that help you because it makes them look good or feel good for a moment and then they realize that your kid is struggling, but isn't going anywhere and that would require more effort and more love than they originally wanted to put into the whole thing. Sounds horrible right? I think it is down right pathetic, but I thank God for the moments where I get to learn what people are really made of. Be them friends, acquaintances or strangers.
We have been so lucky with friends. My old friends live all over the country from Birmingham to Maine and Hawai, but not George's. His old school buddies pretty much all live around here. It is through them that we have had the most amazing system of support. They are a great group of guys and I never hear George talk to any of them without answering, "how is Clayton?" And for the friends that have wives or girlfriends, those ladies have been AMAZING! I would love to call everyone out and thank them, but I probably shouldn't do that here, so instead, I just hope they know how awesome they are. They have always been there and never forgotten the battles our son faces on a regular basis. To them our child was never a cause; he is a little boy who got dealt a bad hand and needs the love and support of as many people as he can get. Not to leave out the friends George has made through work as well who have been equally as awesome and supportive! I personally see them less often, but they have been wonderful to our family in so many ways. One of these friends even offered to let us drive his car to Texas because it got better gas mileage! We refused the generous offer, but it is just an small example of how supportive they have been. I do hope none of our friends ever gets offended if we don't socialize more. We...well, we are just tired all the time right now. It's been a long five years for us (especially the last two) and we don't mean to be recluses (particularly me) it is just very draining to have a child that needs so much. That is not a complaint, because I know how blessed I am, merely an explanation for our lack of socializing.
Then there are the families that get their kids involved. That means so much to me because by getting your kids involved you are helping to build a better future. Sounds like a dramatic statement, but it is unbelievably true. Everything we have been through has really shown me the importance of exposing children to these sometimes harsh realities. Doing so makes them stronger, kinder and more generous. Some of the most amazing people I have met on this journey are the siblings of or other children who are close to the kids suffering with different illnesses. These kids who are involved are some of the most amazing and most appreciative PEOPLE I have ever met. They love life more, they are more determined and ambitious in the right ways...they are just amazing kids...and they care which is the most important thing. So let your kid learn the sometimes harsh realities of the world. Let them know and love a sick child knowing the day might come when they cry because that child's life was lost. Encourage them to spend time with the children with learning disabilities because it is those children that will show them how to love in a way that nothing else on this earth can. Doing these simple things teaches kids love, tolerance and caring above all else and encourages them to be the future researchers or advocates that our world needs.
Unfortunately, with all of the good, comes the bad. It is the bad that caused my love for this blog to waiver. I tired of having a few people question my life based on the words on this blog. Why are they building a house when people are donating money to them? Why are they getting a new refrigerator? Why are they doing this or that blah, blah, blah...I got tired of being made to feel like I had to answer to people for the choices I was making because I don't. I answer to God just like everyone else and that is it. For some reason the people judging me didn't have the intelligence to realize that this blog is not a full representation of my life and that there are details of which they know nothing about. It's sad that when you have a sick child and good people try to help you that you then become a target for the bitter folks out there. We have done all we can to come out of this with our heads above water. We are now trying to sell our home and are building a 1,000 sq ft one bedroom house on free property. We are doing this because we know that we need to be in a financial situation where we can afford to take Clayton where he needs to go without relying on the generosity of others. We know that while our financial burdens and our dependence on medical help with Clayton will be a lifelong battle, we know that others forget. We also know this is our life made up of our choices and it is not anyone else's responsibility, but our own, so we are trying to better prepare ourselves for the future having learned the lessons we have now learned. I can assure you the idea that we will probably spend the rest of our lives poor because of paying for our son's medical needs is not ideal. But we love our child and chose to revolve our life around him and to jump through hoops to keep him here with us. He is so stinking amazing, we would be stupid not to do absolutely anything we could for him. So rather than struggling and sacrificing time with our son to make more, more, more to have the life we always thought we wanted/needed, we are adjusting our thinking and building a life based on what we have right now. We are building a life based on what we need over what we want...it's a process, but we are doing it. Our lives haven't stopped just because our son is dealing with cancer, kidney disease, severe scoliosis and autism. We still get sick and get flat tires, our AC and refrigerator still crap out, and when we try to do the right thing financially with our mortgage company, we still get bit in the butt because the system only helps those who have screwed up, not those trying to be responsible before it is "too late". So yes, we have spent money during the time when people gave to us, but Clayton's fund has always been his fund for his needs. Not for mine and not for George's. Oh and the couch? Simple...I worked my but off to graduate college, I got a job, my kid got cancer I was tired and exhausted and everywhere I turned something was covered in puke, poo or blood and damn it I deserved it. We deserved it...so we used birthday money, then financed it to pay $50 a month...it had nothing to do with Clayton's fund so kiss my butt you bugger for pestering me about it! We deserved a dang pick-me-up! And as for the twit who tried to cry foul because George and I took our son on two different weekend excursions in New York while up there for treatment... As I said before it was the WEEKEND not a weekday. That aside, I pity the fact that you appear to be not only a selfish person, but someone who sadly is jealous that a family struggling with childhood cancer had two awesome well deserved days of fun. But before this person goes thinking we had too much fun let me suggest they learn a thing or two about the difficulties of having a child with learning disabilities. Even trying to provide these children with fun can often be a struggle. Whatever is going on in your life should not be projected on others and it sounds as though you have personal issues you need to work on. I have come to realize just how horrible people treat each other and it is ridiculous!...and I don't want that nonsense and the folks dishing it out in my life. Sadly that means no more blog. I have too many things in my life that could bring me down. I refuse to let other people's negativity be one of them. So this is my goodbye...
To all of our followers that truly care about my family and particularly about my son, I'm sorry I basically deserted the blog and I am semi sorry it is now over, but I have been so gosh dang tired of those people with something to say. I live in a world of 50 shades of crazy and am in no mood for a bunch of grumpy you-know-whats trying to give me crap. So pretty much my bitterness ruled the blog or lack there of. It didn't help that I found myself in a few situations (or at least witnessing them) where people treated each other so disgustingly out of insecurity and desperation. At the end of this life when each of us die, it isn't going to matter how much money is in our account or how many people we were in charge of at work or how many situations we were able to control or what our job title was or even what we say. The only thing that will matter is how we treat people and this past year or so I have witnessed some of the biggest hypocrites ever! People I thought were good people who really live lies or who are only good people when it benefits them. Everything has just been a roller coaster and eye opening over the past couple of years. In both good ways... And bad. More than anything I am just immensely disappointed at how people treat each other. Especially those who are suppose to be good Christians. The manipulation, deceit, lies and general rottenness I have seen from individuals, politicians, doctors, nurses and strangers has definitely shown me the kind of person I NEVER want to be. It has instilled an unfortunate disappointment in our society. At the same time, there have been those shining jewels of people who have taught me exactly the kind of person I would like to grow to be. I have seen selflessness and thoughtfulness beyond measure and I have seen those who have dedicated their free time to help my family and others far beyond what would have been expected from anyone. I hope those people do know that there has not been a single gesture that has gone unnoticed or unappreciated. And nothing I said here is meant to sound as though I think I am amazing and sweet and perfect. Hec no! Quite the opposite, it is not uncommon for me to be a bit bitchy and self absorbed. But I can say I am at least a self-absorbed bitch with a heart of gold who consciously chooses not to screw people over even if it were to somehow benefit me. I am taking my experiences these past few years and am grateful to use them to become the kind of person I would like to be. I have learned so much from the wonderful people that are in our lives and from the wonderful strangers that have made us a part of their lives. I am so thankful to each and every one of you.
To everyone that should have received a thank you note, I apologize, that is definitely my self absorbed side coming out. I get caught up in what is happening to me at the time and everything else gets pushed aside. I am sorry if that is seen as a measure of my family's appreciation or lack there of, because I assure you there is no connection. It is simply a personality flaw I have. I am pathetic at correspondence. I despise talking on the phone, I read e-mails and Facebook messages and often later forget I never responded and I pretty much never mail anything. Seriously me and the post office are the two sides of magnets that just push away from one another. We do not go together like peanut butter and jelly or anything else. I still have my brother-in-law and sister-in-law's Christmas gift in my living room to mail to them. So to those people, I apologize, and I do hope you do not interpret my lack of a thank you note as a lack of appreciation. I am simply more of a face to face kind of person. There are a number of people whose necks I wish I could hug...cough, cough, Sandy and Chris...still waiting to run into y'all! Absolutely amazing people! So if someone did something and did not receive a thank you, please just know I am more of a face to face kind of person and I am probably just waiting on the day when I can hug your neck. I also know there are some people that have done things and don't want to be called out or recognized for them, so for those people if I don't say anything or say very little, it is simply because I am not sure that you want me to.
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For a while during C's cancer I allowed myself to get caught up in things I didn't really care about because I wanted anything to distract me from my reality and the fear it involves. Then for months now, I have allowed all of my disgust and bitterness towards these situations/people to overshadow my family's gratitude and blessings. But slowly I have found myself again. I have embraced my reality rather than distracted myself from it and I have come to be more excited about life than ever before. We are selling off many of our things and simplifying our lives in an effort to live a more peaceful life. I am pretty much going hippie-eco friendly-toxin free-organic-4H wannabe kind of crazy on George. But it's OK because in a world were I go crazy worrying about Clayton (seriously crazy-words can not describe the fear I live with these days) I have found a way to feel good about our lives, the things we are putting into our bodies, how we are caring for ourselves and the impact we are having on the environment. It is something that doesn't distract me from my fears, but rather allows me to embrace them and fight back. It's all something I can feel good about. And aside from my own health complications I am currently battling from stress, years of bad eating and other factors TBD, I am more happy and content with my life and sure of where it is going than ever before.
So to the hypocrites, good writtens. As for the grumps who like to sit behind computers and judge others...you can check me off your list, because my life is not your's to judge. For those sweet people who truly care about my child and our family...you know where to find us at the store and if you want some real time updates, friend me on Facebook or you can check out Clayton's GoFundMe page (when I get it made I'll post a link on this blog) for very simple updates. And for the ones who just like reading my crazy rants, there is a blog somewhere out there that will still be publishing those too...if you know me well enough I would suspect you will be able to stumble across it one day. Or you can Facebook me and ask. But I'm not publishing it on here because I suspect the grumps won't have the courage to ask me the address so hopefully that will help keep that blog grump free.
As for Clayton...he's doing good. Just waiting to do scans... Thank you so much to everyone that cares about my family and especially about Clayton. If the cancer ever comes back, so will the blog. Praying we don't see each other again!
So to the hypocrites, good writtens. As for the grumps who like to sit behind computers and judge others...you can check me off your list, because my life is not your's to judge. For those sweet people who truly care about my child and our family...you know where to find us at the store and if you want some real time updates, friend me on Facebook or you can check out Clayton's GoFundMe page (when I get it made I'll post a link on this blog) for very simple updates. And for the ones who just like reading my crazy rants, there is a blog somewhere out there that will still be publishing those too...if you know me well enough I would suspect you will be able to stumble across it one day. Or you can Facebook me and ask. But I'm not publishing it on here because I suspect the grumps won't have the courage to ask me the address so hopefully that will help keep that blog grump free.
As for Clayton...he's doing good. Just waiting to do scans... Thank you so much to everyone that cares about my family and especially about Clayton. If the cancer ever comes back, so will the blog. Praying we don't see each other again!
Oh yea, as for my test results, no cancer activity at this time. They hope it will remain that way and we'll do MRI's at six month intervals to monitor it for changes/stability. Thanks for the prayers.
