17 Dec 2011
Tags: birthday, brother, death, disabilities, disability, disease, emotions, family, feelings, good-bye, Health, MSA, Multiple System Atrophy, Shy-Drager Syndrome, siblings, sister
Well, today is the last birthday in the family before mine. Unlike the other birthdays I am unable to be there. I know family members end up living other places but I have never gotten used to you being so far away. And never more so than this year. I felt a sense of desperation that you were so far away as Steve made this one life changing decision that forever changed us all. We talked about that a little in February, I so wanted everyone in one place. When you were able to change your schedule the relief I felt was overwhelming. Though still emotional over what was to come, I felt calmer and less hysterical. We would all be together. I could not imagine you not here with us.
While I know your life will continue to take you to new adventures and places, I still regret the distance of land and time between us. I miss your calm and healing presence, my sister.
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.
14 Apr 2011
Tags: brother, dad, death, disabilities, disability, disease, emotions, family, feelings, firsts, mom, MSA, Multiple System Atrophy, parents, Shy-Drager Syndrome, siblings
Of course we have had the first day after, the first meal, first week, first day back to work, first month, etc.
Harder still are the first laugh, first memory I wanted to share with him, first time someone asked me how my brother was, the first time I was able to refer to my brothers death without whispering.
Today is my paren’ts 55th wedding aniversary. My sister that lives here and I will meet them for dinner. It is also the last day my dad has radiation for his cancer. So two reasons to celebrate.
But my other sister who lives out of state won’t be there, and this is the first anniversary my parents have had without him for almost 53 years. The first time they have not had all their kids for 45 years.
13 Apr 2011
Tags: brother, death, disabilities, disability, disease, emotions, family, feelings, Health, MSA, Multiple System Atrophy, Shy-Drager Syndrome, siblings, whisper
For some reason, I could not talk about the actual day or moment of my brother’s passing without whispering. It was the strangest thing. I can talk very openly about the experience. But when I would actually say something about the moment of his passing, I would whisper.
I can actually talk about the moment without whispering now. It was bothering me that I was whispering. It is not a secret, I am not ashamed. Not sure what compelled me to whisper. Thank goodness at least that part is over. On to the next hang up.
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.
21 Dec 2010
Tags: death, disease, emotions, family, feelings, guilt, MSA, Multiple System Atrophy, Shy-Drager Syndrome
A friend from work whose mom has stomach cancer and will die soon asked me yesterday if I feel any guilt. She does because her mom lives in Korea and she feels that if she had insisted her mom live with her in America she would have received better health care.
I was shocked at the question. I do feel guilt, but no one had asked me that before. I feel like it should be me. I don’t have kids and I probably have lived the least healthy life of my family. If life were fair, it would be me.
Every time I look at him I feel it. Not that no one would care if I were gone. People would. But not like his kids will miss him. Not like my other sisters would probably miss him, since he is the only brother. Not like my parents would miss him, since he is the only son. Not like the 200 plus people who came together to raise over 100,000 for his care and his kids. Not like the people who came to fix his yard, his stairs, his bathroom.
Not like that.
He never asks why him. I ask myself every day, why not me?
10 Sep 2010
Tags: death, disabilities, disease, emotions, family, feelings, growing, Health, MSA, Multiple System Atrophy, Shy-Drager Syndrome
I think most people wonder what it will be like to lose a parent. I know my family is lucky to still have both parents. My closest friends growing up have lost one or both of theirs. How will our family change? Will we still get together for holidays and just for fun? What will we do with the empty place in our hearts.
I had not thought about losing a sibling before my parents. Why? I don’t know. Some of us have conditions that if not taken care of could be quite deadly. But even with that I did not see any of us as vulnerable as my parents. Especially our dad who has prostate cancer and was told 20 years ago he probably would not live 5 years. Or my mom who rarely goes to the doctor so could have something serious and we don’t know.
But my brother will most likely die before my parents. This disease will take him from us slowly and painfully. Parts of me are still in shock.