I’ve been looking back over some of the things I’ve written in the last 3 years, since my diagnosis. It brings tears to my eyes every single time I read over it. My external hard drive crashed last year and it had every single thing I had every written in it. I was devastated. Thankfully my Mother had saved anything I had ever sent her! This is one I wrote and had to share because I am so very thankful for the amazing people in my life!
My Sister one night told me that she couldn’t understand not being able to do every day things and having to spend so much time in bed, even thought she suffered from horrible back pain and had for years. She didn’t know how my Wife was able to not get ‘down’ from having to live with me and how she respected her so much for always being right there by my side and loving me every day and not making me feel bad for something I couldn’t control. I couldn’t have agreed more. I text the Wife at that very moment just to tell her that I loved her and that I was lucky to have her. It was so true.
As I have said numerous times, I have a great supporting family who all worry about me from time to time and I am glad to have them in my life. I can’t image having this debilitating syndrome alone. I am absolutely blessed for each and everyone in my life; they all contribute something different and wonderful to my life.
My Mom, who worries about everyone all the time, even though she doesn’t say anything about it sometimes. I know she thinks of me daily as I do my own son and I can’t imagine how it feels to be her and know her daughter is in pain and there is absolutely nothing she can do. She is a young 50-something, incredibly active and fun and wants the same for her children. She was a nurse and she always took care of me and made me feel better. She enjoyed it and so did I. I was a handful yet she has been there the whole time.
My Father, who thinks about me more often than not probably, has learned to be more verbal about life in the last few years. He has always been the strong provider who in my eyes would live forever and never ever get hurt or sick. Of course I know better now. He calls me every Saturday just to say hi and see how things are going. He has always been the peace keeper and the one to reprimand and hug in the very same moment. He is my paradigm.
Both of my parents are my role models, both in different ways; the most important being unconditional love.
My sister has been my best friend, even as fighting children. She is always there no matter how dumb, fun or un-fabulous I become. We can spend hours just sitting and talking about everything, about nothing or about important decisions we have had to make in our lives. She will always be my ‘Godsend.’
My son, where do I even start? I have honestly tried not to let him know how very bad this syndrome is for me. I never wanted him to think his Mother weak. He had to become a little less ‘handsy’ with his playing and wrestling with me, but otherwise I don’t tell him how bad it really is. He simply doesn’t need to know. He needs to worry about teenage things, not a sick mother. He brings me so much joy and I want to do the same for him. He isn’t always as close as I’d like but he is always in my mind and in my heart. I love him more than the air I breathe.
My wife, well…you’ve read a lot about her already. She is amazing, patient, understanding and patient. Yes, I said it twice. To have a portion of her patience would do me very well. I want more than anything to give her a son or daughter of her own, she is a wonderful step-mother and she will be an incredible mother, someday soon I hope. I love her more every day and am so very thankful that she chose me to spend her life with.