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.
25 Oct 2011
Tags: birthday, brother, dance, disabilities, disease, emotions, family, feelings, mom, MSA, Multiple System Atrophy, Shy-Drager Syndrome, sister
It’s funny. The things you remember. I went to see the new Footloose with Holly. I love the original movie. The dancing and music really stand out to me and make me want to dance. It is hard to listen to the title song and not want to shimmy and shake.
I totally forgot the premise of why dancing was outlawed in the movie. The death of a son, brother, friend. I have to admit I was a little frozen for parts of the movie. I forgot the happiness in the movie was preceded by sorrow that tore people apart.
The last few weeks have been rough, but also special. Birthdays, basketball games, I got to take Kellen to be fitted for his homecoming tux, Maddie off to college, Kellen breaking his leg (missing his homecoming). My mom and a sister had milestone birthdays this month.
I feel an intense need to be with everyone on their birthday this year. And true to my nature I have been trying to figure out why.
Is it because I don’t want any of us to feel our birthday is less than? That would be rather egotistical, like I can really make up for Steve being gone.
Am I trying to figure out what it will feel like? Later this year it will be my turn. My birthday missing Steve. So, what does it look like, feel like? Maybe I can lessen the blow by easing into it, watching other birthdays. I hope that is not what I am doing, it is creepy and voyeuristic.
So what does this have to do with Footloose. This movie is about creating a time to dance, giving ourselves permission to dance, even after a tragedy. One of the memories of Steve I think of a lot is him dancing at my wedding. And by dancing, I mean he turned in a circle. All the men lined up and danced one at a time to “I’m too sexy”. When it was his turn, I wondered what he would do. I am sure this was not in his comfort zone. But he went with it. He danced, and by dancing I mean turned in a circle. I think he even kept his hands in his pocket. That simple turn he did meant a lot to me. This was him dancing. We laughed and laughed. He could always make us laugh.
I am settling on wanting to help make it as happy a birthday as possible. I want us all to be able to dance on our birthdays.
(And I am probably watching. I prefer to call it being observant over voyeuristic. It’s my blog so I can call it what I want.)
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.
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.
14 Nov 2010
Tags: brother, Campsite, dad, disabilities, disability, family, Health, mom, MSA, Multiple System Atrophy, National Parks and Monuments, parents, Parks, roadtrip, Shy-Drager Syndrome, siblings, sister, United States, vacation, Wyoming, Yellowstone Falls, Yellowstone National Park
So we got back over a month ago. Yellowstone was wonderful. The weather was super the entire time.
It was strange though…I have never traveled with a person with disabilities. It was probably strange for him too.
On the first day traveling I noticed that we were all battling over who could help my brother the most. Who could buy him the treat he wanted, who would get that item for him, etc. I took a step back and thought, what in the world are we doing? It was like a sick competition.
We are all so desperate to help him but I wonder how much of it is helping him and how much is helping us to feel better. Maybe we think he will know how much we love him by how much we help him. Maybe it makes us feel less guilty for being mobile and less dependent on others for basic living needs. Whatever it is, once I stepped back and saw what we were doing I stopped. At least I think I stopped. I want so badly to make it better, and there is so little that will.
I think more often than not he just wants to be left alone, at least for now. He can still do a lot for himself on some days. But he never knows from day to day, or even during the day if he needs help or not.
http://birdsalltrip.wordpress.com/ link to the blog about our roadtip
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.