09 May 2011
Tags: death, disabilities, disability, disease, emotions, family, feelings, giving, good-bye, guilt, MSA, Multiple System Atrophy, regrets, Shy-Drager Syndrome, tears, thoughts
To my sister-in-law, niece and nephew (given to them 4/30).
I have been telling people what a gift being able to say good-bye is. And that I have no regrets. I was able to do and say everything I wanted to before he passed.
I think about him every day and focus on the moments in the last couple days that bring me peace. One morning few days ago it struck me. I do have one regret. I did not thank him for giving me, all of us, the gift of saying good-bye. That morning when someone asked if anyone wanted to say something, I should have thanked him for letting us love him the way we needed to, which included being there when he left us.
Since I cannot thank him, I am thanking you.
Thank you for sharing your last few precious weeks with him. Being able to visit, help where I could, just sit with him was such a gift. I know how lucky we were to be able to look him in the eye and say good-bye. You let us share that with you and you did not have to. A lot of people have told me not all families could have done what we did together. Of course we would have preferred for the disease to not exist and for him to be with us for many more years. But since we could not wish the disease away, being able to say good-bye healed as much as it hurt to say it.
Maybe there were times when you wished we would all go away and leave you alone. But you never let it show. And hopefully we were able to give you enough time to be alone with him, to be just the three of you (and baby Kai, woof).
I love you all so much.
01 Apr 2011
Tags: April Fools Day, brother, Comedy, death, emotions, good-bye, jokes, laugh, laughter, miss, MSA, Multiple System Atrophy, Practical joke, Prank, Shy-Drager Syndrome, thoughts
I thought a lot about him today. Well that is silly. I think about him every day, many times a day.
But today is kinda like it is his day. He was always full of pranks. You almost had to think it was April Fool’s Day every day with him.
I miss his pranks. His laughter. Him.
27 Jan 2011
Tags: attention, brother, death, disabilities, disability, disease, emotions, family, feelings, Health, heart, love, MSA, Multiple System Atrophy, parents, patience, Shy-Drager Syndrome, sister, Slow motion, thoughts
Normally I am a very impatient person. I hate waiting for anything. I usually multitask all day long, physically and mentally.
I have patience in one place in my life, helping my brother. Everything my brother does seems to be in slow motion. It is so hard to watch him do things for himself, I just want to reach over and do it for him. Not because I am impatient but because I don’t want to see him struggle. Waiting for him to get in or out of the car, sit, stand, walk, feels like time has stopped. He pauses in motion…does he need help, is he thinking of his next move, is he willing his limbs to cooperate? I try to always ask first, “do you need help?” I don’t want to assume. Sometimes he says yes. Other times he says he can do it so I wait till he is done.
Helping him is the most important task of that day. It is the only task of the moment. I not only physically wait, but my thoughts slow down too. Everything focuses to being in the moment. At times it is almost peaceful, everything I do and think in my multitasking world pauses. There is so little I can do for him, but I can make him the center of my attention for that moment. Then, when we are done with that task. I step away, take a deep breath…and all my multitasking tendencies come back in a rush.
If it were possible I would patiently wait for him for him for the rest of my life.
15 Jan 2011
Tags: brother, dad, death, disabilities, disability, emotions, family, feelings, giving, Health, love, MSA, Multiple System Atrophy, parents, Shy-Drager Syndrome, siblings, sister, tears, thoughts
After the Christmas vacation everyone is back at work or school, which leaves my brother alone for several hours and leaves us all in a state of panic. I think he likes some of the time alone…but there is a lot he shouldn’t do by himself….like walk or try to go up stairs.
My husband is spending a few hours a day with him now. We would like it to be more hours, but my brother wants some time alone, and for now while he can be alone I guess we have to let him choose. We all still worry though, but at least it is a few hours a day less.
My husband is really enjoying it. He likes to help people and he loves my brother. They laugh, read, talk, walk. He takes him to some appointments.
When my husband said he would do it I burst into tears. I told my husband how much this means to me and my family. We worry so much about my brother being alone.
It means so much to me, I don’t think I can even tell him how much. So much worry was lifted from my mind, the tension of wondering if he was ok. Personality wise, they are probably a good match to spend hours together every day. My husband is kind, helpful, caring, but also not intrusive. The rest of us would probably be bugging my brother all day with questions and what we would think is helpful advice. My husband has a way of making people feel good about themselves.
I am touched more than I can say, and so proud of him.
08 Jan 2011
Tags: anger, brave, brother, disability, disease, emotions, family, feelings, Health, love, MSA, Multiple System Atrophy, secret, Shy-Drager Syndrome, tears, thoughts
I don’t know how much time we have left with my brother. As yet, I have not shared this blog with my family or friends, and to my knowledge, they have not stumbled upon it.
I struggle with whether to expose myself to him, or anyone. Is this the right time, is it even something I should do? Will it bother people, will they think less of me because I am angry and frustrated.
If this were someone else’s issue I would probably quickly tell them to share. I don’t know if I am as brave as I would encourage others to be.