I don't understand how I can be so lucky. Each day, I look at this man and wonder that... he just came out of nowhere and it was such an instant bond. You know, that look you get from someone that makes your heart beat harder, your brain gets flooded with emotions and those butterflies in your belly. I had all 3 then and still do, just as much today if not more. He just captured my heart and soul.
People often wonder and ask, "what's wrong with him?".... it's not what's "wrong". He's got a condition that is really hard. It's called...
Spino cerebellum ataxia
There's nothing we can do, no meds, nothing. We have thought over and over again what will work for the symptoms. There is nothing so far. We have medical marijuana to try but that a different post. So remember, there is nothing we can do. We've tried everything from vitamins and exercise. He tries with weights on his legs and walks with his walker up and down the hall. That's about it. :-( kills me inside, slowly to watch this. He's in denial when it gets worse.
I'm cooking all the food now, all the housework which is fine, I'm not complaining, I like to take care of my love... but it broke my heart 3 days ago when he died eat very much for a couple days. I thought he was just not hungry
He stopped in the kitchen... looked at the closed fridge doors and stared... I said to him "whatchu making?" He said "nothing, Wendy I can't make my food, it's too hard". I jumped up and went into the kitchen and we hugged for a long time. It's hard for him to admit things. He's a strong man and I treat him that way. I pump him up to keep positive and that we'll battle this fir the rest of our lives and we will make it work. I told him so many times that I'm here to do anything for him. He knows. I will ask him non stop if he's hungry.
With this disease, it makes you not too hungry. With almost all his family it starts with choking on food, then things even like water he chokes on. He can't swallow well at all. I've got him into so many specialists to help him. They only told him to do basic exercises with the throat. Does he remember? No. I wish he would help himself a bit more by doing the things doctors tell him to do. There's a lot to remember tho.... So 2 people in his family that are actually younger than him had the same thing happen to them as far as swallowing. They now have feeding tubes. It's a horrible disease. It eats away your body slowly. I'm basically watching his muscle mass fade away. He is losing weight, 5 pounds so far which is a lot for him. He doesn't really have much muscle in his legs anymore. His legs are little twigs. I am feeding him like no tomorrow! Full, huge meals. I've always cooked my ass off but now I'm a straight up chef :-)
I'm lucky. I feel blessed that he's in my life. Everything happens for a reason. I believe that we were meant to be together, I really do. I'm a caring soul. I always make sure he comes first. I also have to remember that I must take care of myself as well. He's an amazing man. Best soul I've ever met. Sweetest man on earth.
There are so many challenges we go thru daily. People don't understand at all. People who haven't seen him in a long time get really upset when they see him like this. I have to reassure people that I'm here 24/7 doing the best I can. So many people tell me how awesome I am for being here for him. I wouldn't have it any other way. Am I taking the best care of him that I can? I feel like I am. When things come up tho sometimes I don't know what to do. I try, I try to keep positive for him, for me. I have to learn patients with this condition. We move at a turtles pace which is hard. I'm used to speed walking and moving with a purpose. It's a hard thing to try and learn when your life has been used to moving so damn fast. I have to learn how to breathe. I get flustered at times but there is nothing I can do about it. I have to learn how to accept the "stages" as well. It's not easy. You have to adjust your life every few months to the new challenges. Hard stuff.
This is just a little of what's on my mind. I could be here for days trying to explain it all. My mind moves so fast that I can't think straight at times. I'm here to fight this, advocate for him and his condition. I'm not going anywhere. People often ask how can you do this. We're given one life that we know of and how can I spend it taking care of him. I'm serious. It's because I love him. I married him for him. I'm up to this. He's my world. If I had the choice to back up, change my mind and live a life without these challenges, I would choose this life. He's worth all my energy and heart, my soul. Even when times get hard and I can't help him to the point of meeting his needs, he's never going to a care center. He will be here with me forever lol poor guy lol. So, if you ever have any questions, ask. I'm not afraid to talk about it. It's real life and real love. I'm blessed. I'm exactly where I'm supposed to be ♡
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