I know what my parents both want for Christmas this year. This year, my wish isn’t even for the CRPS to be gone. I can deal with the pain; I’m used to it. I don’t remember what life is like without pain or something crazy going on. I wish there was something I could say, do, or give you to change the current situation with me. I know that having me around destroys our family dynamics. They don’t deserve it. Evan doesn’t deserve it and something has got to give. It has been a long time since I have seen my parents two truly laughing and smiling, with pure joy. I can’t even remember the last time the two of you went out to dinner alone.
You see, there is this movie on Netflix called the Christmas Angel. If you watch it, you will see that there are three types of Christmas wishes: possible, impossible, and God. We should watch this movie together, but what I want for Christmas, only God can do. What I want for you for Christmas is possible (for you to go to a dinner. see a movie, and enjoy yourselves, laugh, have a drink or two), what I want for Evan for Christmas is possible (get his EMT certification, do well in school, and ski his heart out), and what I want for Nan for Christmas, well, only God can do.
People keep showering me with all these stuffed animals, food, and other stuff. Trying to spoil me basically, which is again not fair to Evan. While I appreciate their thoughtfulness, material goods don’t mean anything to me. I don’t need the latest in technology and fashion to be happy. All I truly want is to not have to burden my parents with my life, my struggles, and my poor behavior/attitude as a result of my loss of independence. I haven’t been the same since coming home from the hospital, because I have been chained to the house and only let out when I have to go somewhere. Without my freedom, I am nothing. Even though it is tiring, I enjoy a constantly changing environment, as it keeps me distracted, makes me happier, and ironically, improves my energy levels. This basically means that I need my feet flat and usable with a stable left ankle.
I know that my parents will always insist that I am not a burden to them because they chose to have me, but the reality is that I am single-handedly tearing my family apart. I have to ask for so much stuff like a little kid. I can’t really help out with the dogs much. You bring me my clothes. You drive me everywhere. You push that wheelchair through the gravel. I can’t even begin to imagine the medical bills that we have amassed over the years from hospitalizations, copays, and medications.
In the years Nan lived with us, we always told us that she didn’t burden us. We have all the love in the world for her and one day, we realized we couldn’t do it anymore because it was hurting our family. This situation is hurting our family, even if no one else will admit to it.
All of this in mind, I want it to be made known that I do not want anything (material) for Christmas. Anything that has been purchased can be returned and that money can be put toward finishing the house, educations, or charity. This is an opportunity to recoup some of the losses of the things I have had to bail on for various reasons, like the wilderness EMT class. The only thing I truly want is my family back. In my mind, it is about our family, not about me. Remember Father Geoff’s rules: Life is not easy and it’s not about you. Well, it’s not about me. I want my family to be happy again, because the four people living under this roof aren’t truly happy. I won’t be at peace until that happens. Unfortunately (and I am embarrassed to admit this), I am completely and totally jealous of all the people living in beautiful, finished homes with their perfect little healthy families. It’s wrong of me, but it is true. I am sorry that I am not the healthy, hearing, gorgeous, genius baby girl that excelled in absolutely everything I tried.
All the little kid wanted was his two front teeth and all I want for Christmas is my two flat feet.
Love you to the moon and back,
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!