This was not an easy life. I too wondered many times about all of the things we were putting our daughter through, if it was all worth it. The worse thing that I think we ever went through, I get reminded of it EVERY single time I see the St. Jude commercial on tv where the father is crying and telling the audience "There's nothing worse than seeing your child in pain and not not being able to do anything about it."
When my daughter had to have her muscle biopsy she was barely 8 years old. My husband and I stood there with her and we had to listen to her screaming in pain as they cut a chunk of muscle out of her bicep. She begged, cried and screamed for her father to stop the doctors and we couldn't do a thing. (the sedation the nurse had given her was not enough) The pediatric neurologist asked me if she had been given the second dose he ordered, I told him no and he stormed out of the room furious. My eight year old asked her father why didn't he stop the doctors because "that's what daddy's do, they are there to protect their children." We were both crying watching the pain she was having to go through. It's hard when you are a mother watching your child go through all of the things they have to endure. All the questions you are asking about of yourself, I have asked as well but strangely enough I never ask the question all parents ask: "WHY?" My daughter had 19 different serious medical diagnosises on her and when she got diagnosed as being diabetic needing injections, I finally asked that question of Heavenly Father and then of Kristy. This is how that conversation with my daughter went:
"Kristy have you got ANY idea why all of this has happened to you??"
She was very matter of factly, "Gee mom, I can tell you why."
"Great! Go ahead and educate me!"
"In the pre-existance, mom, I was five years old. There was a whole group of us children sitting around Heaven Father and He was handing out problems that we were going to have to deal with in this earthly state; every time He called out a problem, I raised my hand and waved and then yelled: "Pick me. Pick me, Heavenly Father." (I just stood there thinking about the fact that that WAS my daughter when she was five!) She continued on, "Every time He called out another problem, I yelled for Him to pick me. He looked at me and He told me that that was going to be a lot for one person to handle in a lifetime and I told Him, it was okay, I could do it...and so He picked me." Hearing all of that explained her life to me and while I hated what I saw her suffer through, I at least understood that she needed those things not only for her soul to grow, but for mine and her father's souls to grow as well.
I was happy to hear that your son's heart and labs are looking so good, that's a good thing, right? Maybe it will help his stress level to calm down abit with any luck, right? I don't think that makes things easier for you though, right? That's the mother in you. It sounds like your son has a lot on his plate and is having some real depression issues; not exactly uncommon in young transplant patients; my daughter went through that as well. Young transplant patients really live in the moment and do not see a future for themselves so the future scares them; that was something that my daughter taught to her transplant team which changed how young people were treated at the university she was followed at. Their young patients were finding it easier to die than to live so they were commiting a slow suicide. I am well aware of the fact that not all records are connected; I am not sure if the seven year is for "active records" or records that are archived (sp?) at a different facility. Why does your son have trouble doing the schoolwork like the other students? Was it because of the locations of where he had the strokes or is the cause due to his frustration with his health? Did his strokes show up on a CAT Scan or MRI? My daughter was having problems with her vision, letters disappearing off of the page, moving around, that type of thing. And then her memory stated causing problems, confusion on where she was going or what she was trying to do along with memeory issues. Everone thought I was crazy, basically until a new pediatric neurologist got transferred in and took me seriously. When her test results came back he told me, not only did I have 2 Cat Scans to show the strokes, but I knew the exact moment she actually had her stroke! When I told him off the wall things that were going on, he believed me and took my seriously. Have you considered contacting (WRITING a letter as you want everything in writing because it is a solid record) your insurance company to see if they will waver their policy so that you can get your son the care that he needs? It's worth a try as some insurance companies will consider covering someone under certain circumstances. If you see me as a warrior, I'm not the only one here, cc. Take care.