Today was one of the bad ones. I can’t even begin to describe the overwhelming sense of defeat that I felt as I crawled in to my bed at 6pm and cried for 3 hours.
Today started off great. I was in an amazing mood and had tons of energy when I woke up (early); I did the dishes, did some laundry then was able to take my time getting ready.
When I got to work: I danced as I opened the store, I had the music blaring and everything was good. I was great all day; until I wasn’t. Around 3 o’clock I was helping a customer.. talking about pricing and her options to lower her bill. I started a sentence, said a few words, opened my mouth to say something else – and nothing came out. No words. Only “uhh” and some tears. Shortly after that: my neck got stiff, I didn’t have any peripheral vision, my head started throbbing and I started seeing spots.
I was terrified. I still am.
I don’t want to lose my vision; I need to SEE my child grow up. I want to see the happiness in his face when he scores that goal or catches that ball, I want to see how perfect he looks when he heads out for his very first date, I want to actually watch him walk across the stage, I want to see him fall in love. I want to be able to look my grandchildren in the eyes as they take their first breath. I don’t want this damn disease to win! Just as importantly, I don’t want to lose my ability to speak and make sense. I want to be able to tell Ryder how proud I am of him for scoring that goal or catching that ball, I want to tell him how handsome he looks before he heads off on his first date, I want to be able to tell him how proud I am of the man he grows to be. I want to tell him how much he changed my life the day I found out that I was his momma. I want to always be able to remind him that he’s the sole reason I have the strength to get up and fight this fight.
I never want to lose the ability to tell my parents how much they mean to me or proud I am to have been raised by such amazing people. I want to be always be able to remind them that they did their very best. I want to always be able to have morning chats with my mom over coffee. I want to always be able to sit down and watch the Discovery or Science channel with him and discuss all the cool things we learn. As long as their alive – I don’t want to ever walk into a room and not be able to talk to them or to see their smiling faces.
I don’t ever want to stop telling MIchael how grateful I am that I have him by my side and how I thank the Heavens every single day for him messaging me on that August day. I want to always be able to tell him how handsome he looks when he first wakes up and has that sleepy smile on his face. I want to always be able to tell him that when he rolls over in the middle of the night and pulls me close to him, it’s the only time I feel like everything will be okay. I want to always be able to watch him with Ryder and the amazing bond that they have had from the very first day. I want to be able to look at him and see his sweet face when we are 80 and tell him I don’t know how I could face this life without him.
I want to always be able to express my love to those who mean the most to me.
I don’t want it to be like this. I won’t let this disease win. This is why I #FightForACure #IIH – I’m literally fighting fo rmy life.
I’m normally really good about not wallowing in the “why me?” but today; today, it’s hard.