I have been struggling with writing this for about a week. I think that this, acceptance, is the hardest thing that I will have to do when it comes to Nicole’s diagnosis and her day-to-day life. For the first one to two years after her diagnosis my first thought when I woke up was this is a bad dream before reality set in. I don’t do this anymore so I guess this is progress.
I have a hard time accepting this as a whole. I don’t struggle as much when she is doing well and we don’t have appointments, hospitalizations, site changes etc. I can accept and live with our life. I struggle with accepting that doctors and the medical community in general having let Nicole down by not listening and not seeing things they should have. I also fall into this. I have to take some of the blame for this also because I didn’t listen enough to Nicole and I didn’t push hard enough with the doctor’s for answers that weren’t just blow offs.
I find one of the hardest things to accept is why this had to happen to our family? Why this had to happen to Nicole? I know I will never have the answers to these questions but knowing this doesn’t make it any easier to accept.
I have to accept that Nicole hasn’t and will not have a “normal” life regardless of transplant or not. I have to accept that she could (and most likely will) die from this disease as well as she could die during or after transplant.
I meant to get this down on paper sooner because what really got me thinking about this was something that was said at rehab and I remember going into the bathroom and telling myself how I needed to accept this illness and how our life is and how much I don’t. Some of this comes from the fact that I will put off the listening to medical appointments, updating notes, making phone calls, doing research etc. that pertain to Nicole because it is easier to procrastinate. I don’t specifically remember the trigger, but I think it could have been when I was told by one of the RT’s (respiratory therapist) that the transplant center we are going to has not done a heart/lung transplant and at this moment in time Nicole would be their first.
I guess I feel if I accept Nicole’s illness and our life then I say “it’s okay… and I can forget the damage that has been done to our family and Nicole.” It feels like when I have been betrayed and I know I should forgive but if I do I feel like I’m saying it’s okay what you did, if this makes any sense.
Last week, Nicole and I went to lunch with her old RT, Kathy. When we got back home Nicole went inside and Kathy and I sat in her car talking. I was telling her about the transplant and told her that I was terrified about it especially the heart/lung. I said, “How am I suppose to handle seeing her hooked up to ventilator’s etc., and watch her go through all of this? I have a hard enough time seeing her come out of sedation from a right heart cath or seeing her in so much pain every time she has a site change.”
She said to me that, little by little, God will work me up to be able to handle it so when the time comes I will be ready. This got me thinking… as I wrote my blog about how my speech went I believe that God used those four years on the board of the homeschooling group to get me ready to not only speak at meetings and events but also using it to bring me out of my shell so I wasn’t so quiet and afraid to confront and asked questions that needed to be asked.
Sometimes I feel like I could do so much better if she just has the disease and it is managed with medications and she doesn’t get a transplant. But I know this is for selfish reasons. She would have to rely on me to help her and she wouldn’t go out on her own in the world. I know how bad this sounds because we are suppose to want our children to go out and spread their wings. So much of my life is wrapped up around her and her care. I remember when my mom was diagnosed with Stage 4 lung cancer it was like she gave up. She didn’t want chemo or radiation and she was going to refuse all treatment. I begged her not to do this. I don’t remember what she said leading up to this but she said,”You don’t need me anymore.” Which for her, probably was her excuse or justification for refusing treatment. Of course this wasn’t true, but this was her truth. I don’t want to hear or feel that Nicole doesn’t need me anymore.
I started on January 11th of this year going through and trying to get all of Nicole’s medical paperwork organized after just keeping it in a wicker chest. I worked on this every morning from 5:45 – 6:15 a.m. I am grateful to Sarah Welch of buttonedup.com for suggesting that I do it at this time which is a wonderful fit for me. I worked every day without fail to get the paperwork gone through, sorted by subject and put into binders. I finally finished this on Feb. 25th.
At this time I asked Denise if I should continue to use this time for medical organizing or move to doing the same thing with non-medical paperwork and she said continue medical organizing. I agreed with her and still do but this is where acceptance (which I believe is the opposite or the positive side of denial) comes in. I am now at the point of trying to go through about the dozen and a half of appointments that I have taped in the last six to nine months or so. I really hate doing this.
I did good for a few days and then I stopped and made a new binder for lab work and other little odds and ends. Yesterday was the first day since January that I didn’t work on medical organizing in that time slot and today was the second day I didn’t work on it. I woke up this morning with dread at having to listen to the appointments. I can make an excuse: I wrote down the doctor appointments that I have on my tape recorder and now I can’t find the sheet of paper so I can’t work on it because I don’t know what I am listening too, or I don’t know the dates of the appointments so what good does that do me?
These are pretty pathetic excuses I know. I don’t know how I am going to force myself to do this. I can undo all that I have accomplished if I don’t get past this hurdle and just do it.