In the last boundaries class Denise gave us an assignment in which she asked what do you blame yourself for. I wrote how I blame myself for Nicole’s illness and how because of my choices or lack of I am to blame. It was very difficult for me to write. It was very difficult to give this the name of guilt/shame/blame.
I will be having a birthday this week and while I would rather forgot that piece of information it is one of those “milestone” birthdays and I know my friends and family will not let it be forgotten. I find myself a little discouraged. Every year around this time I reflect on what I have accomplished for the year and during my life. I know myself and it doesn’t matter what I have accomplished it’s not good enough. I know that I have accomplished things that I am proud of such as getting the policy changed to help other families who need financial assistance for one of the PH meds through a pharmaceutical company and this is how/why we went to Hawaii. I have gone back to school etc., etc.,
On the flip side of this though I think about all the things that I have done wrong. I am going back to my friends guilt/shame/blame when I think about my role as Nicole’s mom and how I have probably done her a disservice. I have never really made her do many chores or have a lot of responsibilities around the house. Some of this reasoning was because she was sick a lot as a child and because of very high anxieties that would set off what I call “meltdowns”. She is 17 now and would she be able to go out in the world and take care of herself? I believe the answer is “No”. Nicole is extremely intelligent but she doesn’t have much common sense, motivation, or drive. She tends to be lazy but don’t we all for the most part? I think for Nicole her self-esteem is very low … I have tried everything to get this up for her but I think her history of making friends and them betraying her over and over has contributed to this. She is naturally a very shy and quiet girl. While my hopes and dreams for her have changed since we found out just how sick she really is I still know that she can and will do great things and be a great influence on others.
I have talked to the attorney who represented us in the bankruptcy about getting medical power of attorney so I will be able to continue to make all the calls to doctors, hospitals, lab, pharmacies etc. that I do now after she turns 18. This is where Rick and I disagree. He thinks I need to teach her how to do this all. While I do believe this is true in theory but in reality I don’t think that she is emotionally, mentally, physically ready to do this. She won’t even answer the telephone (unless it is me), let alone talk on the phone. I just feel like I am going to loose her in so many different ways which I know is very selfish of me because I do want her to make an impact in the world.
I know I wrote about this a few months ago or so. I nominated her for Make-a-Wish. I know it isn’t that she doesn’t want to do it but it is she doesn’t know what she wants to ask for and what if she makes the wrong decision. I did get the application form but haven’t heard anything since I faxed it back. I believe at this point they contact her doctors or should I say two of her doctors that pertain to the life-threatening illnesses she has.
My goal for this year (through to my next birthday) is to finish school become certified, finishing school for Nicole and have her graduate, continue to be a voice for Nicole even though so far this hasn’t happened much or at least the way I thought it would, still have our head above water financially and have Nicole stable insurance, be healthy, be happy, get the clutter out of my house, my mind and even lose some weight, and last but not least get rid of my good friends guilt/blame/shame for good and forgive myself for my past mistakes.
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS