October 31, 2012

October 30, 2012

Still here. Just been crazy busy with work and the house and trying to plan Clayton's birthday at the last minute. Things are going good though! I'll do a big post sometime this week to catch everyone up...


November 4, 2012

This post was somehow misplaced...


I'm beyond conflicted right now. On the one hand we just had a great Halloween with our little courageous lion, yet on the other hand, I am sad about the future. Clayton will be 4 tomorrow and thus far we have battled kidney disease and cancer, but the war is yet to be won. Instead, as his impromptu 4th birthday celebration began today, I received a phone call from the orthopedic surgeon in NYC. He was able to review Clayton's scans and he feels the best thing for Clayton will be for him to receive treatment at the Texas Scottish Rite Hospital for Orthopedics. There is a doctor there that Dr. Boachie in NYC has worked closely with before and he feels that he would be qualified to oversee Clayton's care. Dr. Boachie expressed his concern taking Clayton on as a patient given how often he is out of the country. Dr. Boachie will also be retiring in the next few years and wants Clayton to have someone who will be able to follow him from beginning to end. The good news is that it is amazing to have doctors who are so devoted that they study your child's scans and call you on a Sunday. The bad news is...Texas. Our lives will no longer be split between just NYC and Alabama, but we will now be throwing Texas into the mix...Dallas to be precise. I always knew I wanted to see the world and give my child the world, but this was never how I meant for those things to come to pass. As I've said before, my experience has taught me prayers should be specific.
One of the things I see frequently throughout all of this, is the difference in my faith verses many of those around me. I believe in God. I rarely go to church, but I believe in God and I have faith. I believe in the same fundamental Christian beliefs that all Christians do, but I am not the kind of person that talks a whole lot about it. My spiritual beliefs are held close and very personal to me and not something I share often. You won't find me saying things like, "I am witnessing the awe-inspiring power and healing of our Lord." There of course is nothing in the world wrong with speaking about things like that, it has just never come natural to me. I read so many of the testimonies of other moms for whom it does come so natural and I can't help, but wonder if I am just a bad Christian. Am I inadequate as a Christian? Would my child be better served by someone who is more devoted than I am? Does my child deserve someone who is a better Christian? There are times where I have been careful not to pray too hard, because if I lost my son I didn't want to hate God; it was like I felt not praying too hard would mean I would only blame the science. The reality, I know, is that it doesn't matter, because if I ever lose Clayton I will ask why. I will ask God why? I will ask why there aren't more advances in science to prevent families from feeling that kind of pain? Losing Clayton would mean lots and lots of why's.
I already ask why and have a hard time making sense of it. Everyday I watch the sweetest most innocent thing in this world battle one thing after another knowing it isn't fair that he should have to carry these burdens when there are so many bad people out there who quite frankly probably deserve this hell. I'm sure that makes me a bad Christian to say that, but it is what it is. It is so hard to make sense of my sweet little baby-angel suffering through all he goes through when there are rapists and child molesters out there walking free and biding their time in prison. Why can't those men suffer these trials? Why can't rapists be sentenced to living a life with severe scoliosis that will continue to get worse until they are so hunched over all they can see are their feet? Why can't we take the cancer from the innocent and give it to the child molesters so that they can suffer until the cancer rids this world of their miserable dirty souls?
There are probably some people out there thinking, "wow, this girl is crazy!". Or maybe that I'm not a good Christian, or maybe that I should seek help, and I imagine there are at least a few of you (maybe more) who are right there with me. But please understand that it is hard for me to see the bad rewarded (or at least not punished) when I see the innocent suffer so much.
Let me follow the above with this: George told me he thinks I am harboring too much anger these days. I know he's right, but it is a product of the life I am living and it isn't something I can't just snap my fingers and change. With everything that George and I see, I hate watching how unfair this world is. I know that fair was never promised, but that doesn't mean that it many areas it cant be achieved. It seems that not enough people are out there fighting for fair these days. In a world where children are going to get cancer and there isn't anything that can be done because that is the way it is, you would think that more people would stand up to fight for what is fair everyday...to fight for what they can change...but they don't. And that makes me angry.
It isn't fair that our family and so many others have to suffer the trials of childhood cancer like we do.  It pisses me off that on top of cancer, Clayton has the kidney disease and scoliosis that he has. Shouldn't just one of those issues be enough? Apparently not. And that isn't fair and makes me angry.
This isn't a life someone grows up dreaming about and even though I hate that we were chosen to go through these things, that is the one thing that I at least understand a little bit. You see George is a very patient man and devoted to his family. He will sit by Clayton's side in that hospital and never think twice. He isn't going to walk away because things get too tough with all of this. And I can be ...shall we say, scrappy. And if there is one thing you really really need when you have a child with cancer, it is to have some fight in you. My baby needed a parent that would fight like hell and he got it. It is both my best and worst quality. George and I complement each other well in all of this. There is that perfect point where George's passive and my aggressive come together to fight cancer and I am sure that has something to do with why our child was chosen to carry these burdens. Before Clayton was even in this world, God had already armed George and I with the tools we would need to fight for our child and be there for him. But despite knowing all of this, it does not change the fact that it still just pisses me off that he has to suffer this at all.
It makes me angry that the end always seems out of reach. You can't hardly be relieved to be through one hurdle before you have to jump over the next one.
And I'll tell you what really makes my blood boil these days is listening to these dumb politicians. I'm sorry Mr. Obama, but my family is in that poor to middle class range that you claim to be doing so much for and you haven't done crap for us, so stop claiming you have. Our tax return last year was the smallest it has ever been and it wasn't because we were making more money...because we weren't.  We can't even refinance our house in part because of your policies that you claim are doing so much good. And our child is one of those that you claim would benefit from your Obama-Care and disability initiatives. I call bull shit. The only thing that we can benefit from is the doing away of the pre-existing conditions. Otherwise Mr. Obama, I would love for you to tell me why my child who has cancer, kidney disease, 48 degree scoliosis and 68 degree kyphosis isn't eligible for Medicaid. The crazy thing is that we have other insurance. Our family's primary insurance is BCBS of Alabama and we only need the Medicaid as a secondary insurance to help keep medical bills under control. Do you hear that Mr. Obama? We are hard working Americans trying to work hard to better ourselves and be productive members of society. We spend everyday trying to make sure that in addition to being good people, we are helping ourselves and yet rather than our government providing that extra little help with a secondary insurance for our innocent child who has never done anything wrong in his life, our government would rather waste money redistributing wealth to those that are too lazy to help themselves. 47% may not have been accurate, but Romney was on to something. Good for Romney for having the courage to stand up and say lets stop rewarding those that don't try and don't care and start rewarding those that do try and do care. Our government is throwing taxpayer money away on people who just don't care rather than investing it in children and people who are trying to better themselves. And all of that pisses me off.
But what irritates me the most about all of it is the lack of good men willing to stand up for the greater good. Why are people so scared to stand up for what is right? And it isn't just other people that I am disappointed in, it is myself. Despite everything I feel and everything I am going through, I find myself eager to forget the pain and forget what needs to be done and just throw myself into my hobbies instead and try and block out the bad. But that's the problem. What if people would stop being so lazy and selfish? Imagine what we could accomplish. It truly would be amazing. And of course there are already many many of these amazing people out there, just not enough. There is strength in numbers and power in people standing together, but if people can't stand together, then everything will fall apart and we are definitely witnessing a lot of that these days. And before anyone asks themselves why I keep harping on so much about government, let me tell you, government has a lot to do with research funding among other things. A lack of good government can and does slow the advancement of medicine. Like so many other things, advancements in the medical community start with good government. It means the difference in 1 cent per dollar in funding verses 10 cents per dollar. It means the difference in treatments that are FDA approved and available nationwide verses those that are only available in one place. It means the difference in life and loss for too many. So we need strong men and women that are brave enough to fight for what's right and smart enough to know the difference.
It makes me angry that I want so desperately to make a difference and yet I wake up and go to bed every day as a nobody that has yet to become a somebody that can make a substantial difference. It makes me mad that I fear that too many of the wrong people are going into politics and not enough of the right people. Those "wrong" people and their empty promises and selfish ways just irk me. It pretty much just pisses me off that I feel like I can't fix anything. I feel like there is so much that is broken or sick or in need of healing and I can't do a damn thing and I just stinking hate that.

Sorry for the rant, but this is why I'm mad and this is what's on my mind right now. These things affect my sweet baby and Matthew and Abigail and Lily and Justin...these things affect everyone. I hope Americans can elect leaders that will give them the hope and change that is really needed. I hope people can see the bigger picture and recognize just how far the effects of every decision they make will reach. I hope that they can see that if we start with change in our government we can do anything. We can make things better, it just takes good men and women standing up for the greater good. And yes, the cure for childhood cancer in some ways starts with changing our government and it's support of childhood cancer.
Anyway, this is me...a little bit angry at the world, but still hopeful...

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