12/11/15

Musings




Ever since Jamey came down sick, I always hope that the new year brings answers and possibly a cure. February makes year four. It isn't an easy road. In 2016, I hope to finally start finding ways to make it easier for other medical parents. I know my Man child is an adult now, which has it's own set of issues, but I'm a mom who was suddenly thrown in there. I don't have the typical medically frail child. Looking back, I can see where somethings today finally make sense. His asthma, the jaundice as an infant, the early puberty... It all somehow brings a few answers with a ton more questions. 



The questions I would like to see answered this appointment? 

  • How close is he to needing a transplant?
  • Will they transplant while he's on his current pain medication?
  • What are our options if they won't?
  • How do all of his conditions fit together? Or do they?
  • Will transplant cure the pain in his side? 
  • Are they willing to allow my child to die because of CRPS/Liver disease?
  • Who do I have to fight? 

Not only am I terrified for my oldest, but I'm heartbroken for my youngest. If Jamey weren't sick, he would be in his second year of college. We would still have our home, both Jim and I working. The financial part is devastating. It's December 11th, and I have no idea how I am doing Christmas. I have absolutely nothing. He's only fourteen. The only thing he wants is a lap top and we are trying to figure out how to do that for him. Jamey's computer kicked the bucket, I have no way to replace it, and it's a huge tool in his ongoing care. I feel like I'm constantly having to choose between my children and its a tough place to be. 


Ed didn't get glasses for the longest time because I was too afraid to check on the benefits and before, Jamey's cost more than we could afford. Which was way more than we can afford now. I should have checked, but eye sight or pain medication for a kid with CRPS? How the heck do you choose? I went with what could be lived without the easiest. Ed not being able to see clearly was less important than Jamey living in tortuous pain. I make a lot of decisions based that way. There is no other choice and sadly, Ed bears the brunt of it. And I just sit and cry over the unfairness of it all. 


And I absolutely hate saying "if Jamey weren't sick". He didn't ask for any of this. It makes it sound like all of our troubles are his fault, but thats far from the case. I would do anything to save his life. Circumstances are a huge part of our problems. Not Jamey. Yes he is the one who is sick, but there are a lot of factors. 


  • If medical care wasn't so expensive.
  • If we had made better choices before all of this.
  • If I knew what I was doing to help raise funds for his expenses.
  • If he was eligible for SSI. 
  • If people hadn't went behind my back during the first 2 years and said I was exaggerating. 

With that last one, I may never be able to forgive, especially if Jamey dies. And that is a real possibility. I am not a perfect person. I have faults. But lying about Jamey is not one of them. I would give my own life for it not to be true. 


But I have to push on and do what I have to in order to give him the life he deserves. All I have ever wanted for the boys was for them to be happy. To live their lives being the strong, courageous, giving young men I raised them to be. To find pride in their own actions. To live their dreams. And a grand daughter. I already put in my order for that to both. 


I do have to look at our blessings.

  •  Ed is healthy. He is so easy going and forgiving. 
  • There is still hope for a cure for Jamey, be it transplant or some other miracle. As long as his heart is beating, there is hope. 
  • Jim and I have learned how strong we can be. 
  • I've learned that I don't need my family. As much as it sucks to not have them in our lives and helping with at least moral support. I don't need them. I've learned to stand alone. 

I'm going to try to find some way to help learn about fund raising. It won't help this Christmas, but maybe it will make 2016 a little easier. Maybe we'll be able to keep the car? Who knows. I know I have to try. 

0 Comments:

@TerrorMom

My photo

I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

At Home With TerrorMom Template by Ipietoon Cute Blog Design and Bukit Gambang