I am watching the most incredible documentary on an NFL Player. I don't like sports unless it is live, preferably with free tickets and some alcohol. I grew up loving the Atlanta Braves and Duke college basketball. I got into that because of the girls I hung out with in school- they were The Ones on the sports team. I was barely coordinated enough to cross the cafeteria without tripping. I was never really encouraged to do sports . My generation of parents- really didn't encourage much besides candy and just getting through the days, worrying about paying bills and staying afloat You were lucky to get some kool-aid when you were kicked outside for the summer days. My grandmother gave me the gift of books and religion- an oasis for the chaos around me.
Tonight, I sat down on a snowy evening to watch Amazon Prime- with a local bottle of wine. I was feeling good. I was sick for three weeks- which distracted me from my depression and the situation with my son. My beautiful baby who jumped from a fourth story balcony in front of my eyes- even though he made it with a bruised body and spirit- it made me realize that I may bury my son still. He has taken a turn for the worst as of late. This one event in my life put everything into perspective- from friendships to worrying about dumb stuff to how much I put my life on hold and how much I just said about things in my life- "oh, because of Kiernan's issues." This was not fair to him- and at times I let myself go into limbo because Carrie's world had to stop for "Kiernan's issues."
So I watched a documentary, or still am as I write this, about the football player Steve Gleason, who played for the New Orleans Saints who battles ALS and documented his plight via video journals. I started to cry. So much of it I could relate to. I know, I know, ALS isn't anything compared to my little problems. I feel humbled to even compare the two. Watching this strong football player basically die outside his body but be aware of it- brought so much forth in my mind; and his struggle to live and love.
Firstly, I feel so sad and ungrateful that for a moment I felt resentful about Kiernan's plight as a caregiver. The four years I have taken care of Kiernan's issues- and watching this family deal with ALS- this strong football player and even stronger in spirit who just wants to live, parent his son and love his wife. There was times I wanted to die and what did I do to deserve this with Kiernan- wanting to know what I could do to atone for my sins. I honestly think at times it is is all my fault. All of it.
I feel the frustration of the player's parents- watching their son slowly deteriorate. There are times I want my son to feel peace and not feel his physical pain and the emotional torment. I want him to live- and I feel powerless. I want to give him the spiritual compass- but knowing that it has to come from within him. His need to keep going must come from Kiernan. It is so cliche but so true- we should not bury our children as parents- it is like cutting off a limb or taking our heart outside of our bodies.
I feel the same feelings at times of caregiver burn-out as Michel, his wife, goes through- I know my sparkle has some dust on it. I know I forget things. I know when I am around people, I am not "really there." I feel forever changed and there are times I want to scream in a meeting or around friends- do you know how much I am in pain? Do you know what I am dealing with? But it is not me directly going through it...what is Kiernan going through? It is selfish of me. People say I am strong- but I am not. I have to do this. I was never given a choice. Being strong is deciding to climb Mount Everest or deciding to become a doctor with all the odds against me. I didn't pick this. I watch Gleason ask his wife if she is okay. Anytime I sigh, Kiernan asks me if I am mad. It makes me feel so sad- he is so scared that I may be upset and feels a burden to me. That night he jumped, he felt that he didn't want to disrespect me in an argument and everyone would be better off dead without him.
Six years after being diagnosed with the disease, unable to speak or move, Steve Gleason wrote on Twitter, "...I am happy."
Keeps my suck in check.
To Watch the Documentary, Gleason To Change Some Perspective
To Know More About Kiernan's Plight The Day My Son Almost Died
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