Five down, one to go.

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.

Every (damn) Day

Every (damn) day I miss Steve.  The holidays just make me miss him more.  Every year Steve wrote a Christmas letter.  He would take one word and write a paragraph that started with a letter from the word.  This year Polly wrote a beautiful letter using the word “traditions”.  It was a great way to honor Steve, so thank you Polly.  I know this was not an easy thing to do.

Every (damn) day as the holidays approach, I find myself feeling more and more vulnerable.  When making the Christmas calendar for my parents this year (oops, that’s a secret…don’t tell mom and dad) I was often distracted by pictures of Steve.  The memories the pictures evoked whisked me away and I found myself floundering.  They are all happy memories, but also reminders we won’t be able to create new memories of Steve, with Steve.

Every (damn) day I carry Steve with me (right here I could say, “He ain’t heavy, he’s my brother” but I won’t).  He is tucked into my heart, and my purse.  Yes, my purse.  The coral heart Becky gave us all to hold the day we said good-bye to Steve, the fishing flies (kept in a butterfly container so I don’t poke myself rummaging in my purse).  I also keep the memorial pamphlet and the letter I had Greg read at the service. 

I read these often to remind myself how much laughter was part of Steve’s life.  I cry but I also laugh remembering what a personality he had.  I will need to remind myself of this often in the next week or so.  If he could he would make us laugh and laugh often.  Especially when the tears start to show.  Steve had a way of not letting people take themselves too seriously.  I need a little of that right now.

So here’s to you Steve. My good-bye letter that Greg read for me at the service in February.   Greg described it as a love letter to my brother.  That doesn’t sound the least bit creepy.

I have been doing a lot of writing about Steve the last few days, one would think I am out of things to say.  Anyone who knows me will know I always have something else to say.

Sometimes when someone passes everyone talks about how wonderful and perfect the person was.  So let me start by saying Steve teased me constantly, tricked me over and over (I fell for the same prank more than once), knew exactly what buttons to push, and he was hugely competitive sometimes he would do anything to win.  He hated to lose to anyone especially his youngest sister and we had to play Boggle with a dictionary to catch the words he would make up.  When he realized he would never win that game he refused to play. 

Now that I have that out in the open, let me say Steve was wonderful and perfect.  He took me fishing even though he knew I would talk the entire time and scare the fish away.  When I was 15 he took me to college with him where I spent my spring break attending classes.  I did not know how much I would love that, but he knew I would.  When I was 18 and he was 26 he took me with him to one of his baseball tournaments in Eastern Washington.  When we got back I got sick and he stayed on the floor with me for three days and brought me anything I needed.  He always made me laugh, and laugh, and laugh.

We watched some videos of Steve this weekend and I was reminded of how vibrant he was, how much making others laugh and be happy was important to him.  I believe Steve showed how he loved others by his actions…baking, making us laugh, teaching us to fish, and remembering little details about us.  How hard these last few months must have been for him as some of these avenues slipped away from him.  How hard it must have been for him to watch our hearts break when he spent his whole life making us laugh.  But he never lost his sense of humor, making us laugh till the end, despite our tears.

We honor Steve with stories, memories and laughter.  Polly, Maddie and Kellen will have no doubts how much Steve is loved and missed.  Polly brought out the best in Steve and I see many pieces of Steve in Maddie and Kellen.   They embody many of Steve’s qualities and will find their own way to pass on his legacy. 

There are so many things I do not know about my brother.  In this last year I got to meet him many times over through how other people see him.  

I am proud to be his sister.  He is beautiful.

Since when does good news make you want to throw up?

Today I heard the best news I have had all year.  And it made me almost sick.  Believe me it was good news.  Wonderful, joyful, knock me to my knees news, almost had to visit the bathroom news.

The radiation my dad went through earlier this year is working.  If I believed in a god, I would be thanking him/she/it.

Thank you, thank you, thank you.

I did not realize how much my body was stewing on this.  Whatever poison of worry that was running in the background of my soul was released.  I was immediately drained, exhausted.  I wonder if I could have used the sick bed at work to cry my eyes out?  I have to sign a log sheet explaining why I need the room.  I wonder if “my dad will live” counts.

He adds the disclaimer that he is not cancer free yet.  Knowing dad, he probably wants to keep using this so someone will bring him ice cream.  Don’t worry dad, you have your knee surgery coming and after that your other knee…plenty of opportunities to be waited on coming your way. 

Oh, and love…lots and lots of love.

Break Out the Day Planner

We plan the most important decisions, days and events of our life.  Or at least we try to.  Some plan how many children to have, and when to have them.  Most plan their weddings and if you are a woman (and some men), you probably started planning it in elementary school (I know I did, even had a folder I kept till my mid 20’s).   If we are lucky we get to plan what job we have and when to move on to the next job, or when to retire.  We plan out where we live as best we can. 

There are some decisions I can make very fast…but I can take an hour to pick out a name for a character I create in an on-line game me and my husband play.  It took me three hours to pick out my eye glasses, three years to pick out curtains, and 10 years to pick a color to paint my walls (I have only managed to decide on the bathroom so far).   If you think I am joking, then you haven’t met me or been shopping with me for glasses or paint.  The curtains I blame on my husband…he insisted on very thick, functional curtains and I wanted pretty flowery ones.  What did we settle on?  Sage green with tassels. 

If we spend time planning other parts of our lives, why is it so strange to plan the last important decision of our life? (disclaimer…only with regards to death with dignity, of course)

After trying to accommodate us by avoiding birthdays, looking at travel plans and school schedules, my brother picked his day and the planning began.   Yet, it was surreal, planning his last day with us and the celebration of his life.   We  grieved while we talked casually with him and each other  about food, preparations, programs, music.  He did not want a service but I and others told him the service was for those left behind, not for him.   We needed this for each other.  As strange as our conversations felt, looked, and sounded, for me it gave me a sense normalcy, just planning any other family event, right?  Though there were times it was awkward and I would think,

“Am I really talking to my brother about his death?” 

“Did I just ask my mom to bring her paper plates to my brother’s last dinner?  I am thinking of being green at a time like this?”

“Am I really using a toothpick to scrape the medicine out of the capsules for my brother’s last drink?”  

But, by planning for his death we were able to give his life the attention he deserved.  Probably over 100 people visited him in the last week, and he received many, many letters.  People were able to tell him how he impacted them, share stories and laugh.  If he had doubts at all that his life had meaning, those doubts should have been washed away by the downpour of love, gratitude, and kindness from those he touched. 

How wonderful is that?

Why the heck am I whispering?

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.

The Wanabe Hermit 5/5/1958-2/18/2011

We celebrated my brother’s life 2/22.  For someone who wanted to be a hermit, he sure knew a lot of people.  I think over 400 people showed.  What a testament to his life and how he touched others.  

The location was perfect.  A lodge on a lake the he fished and jogged around and in the last year still tried to walk around.  The large windows faced the lake and falling snow. 

My sisters and I created a slide show for him.  Our tribute. 

I could not talk at his service but I had the following read.  I took out the names as I am still not sure if I want people to know who I am.

I have been doing a lot of writing about my brother the last few days, one would think I am out of things to say.  Anyone who knows me will know I always have something else to say.

Sometimes when someone passes everyone talks about how wonderful and perfect the person was.  So let me start by saying he teased me constantly, tricked me over and over (I fell for the same prank more than once), knew exactly what buttons to push, and he was hugely competitive sometimes he would do anything to win.  He hating to lose to anyone especially his youngest sister and we had to play Boggle with a dictionary to catch the words he would make up.  When he realized he would never win that game he refused to play. 

Now that I have that out in the open, let me say he was wonderful and perfect.  He took me fishing even though he knew I would talk the entire time and scare the fish away.  When I was 15 he took me to college with him where I spent my spring break attending classes.  I did not know how much I would love that, but he knew I would.  When I was 18 and he was 26 he took me with him to one of his baseball tournaments in Eastern Washington.  When we got back I got sick and he stayed on the floor with me for three days and brought me anything I needed.  He always made me laugh, and laugh, and laugh.

We watched some videos of him this weekend and I was reminded of how vibrant he was, how much making others laugh and be happy was important to him.  I believe he showed how he loved others by his actions…baking, making us laugh, teaching us to fish, and remembering little details about us.  How hard these last few months must have been for him as some of these avenues slipped away from him.  How hard it must have been for him to watch our hearts break when he spent his whole life making us laugh.  But he never lost his sense of humor, making us laugh till the end, despite our tears.

We honor him with stories, memories and laughter.  His wife and kids will have no doubts how much He is loved and missed.  His wife brought out the best in him and I see many pieces of him in his kids.   They embody many of his qualities and will find their own way to pass on his legacy. 

There are so many things I do not know about my brother.  In this last year I got to meet him many times over through how other people see him.  

I am proud to be his sister.  He is beautiful.

 

 

Pause for the cause.

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.

Tantrum thy name is, me.

So, I had this draft post titled “Toss me a pillow, I want to throw a tantrum” for a while.  This was going to be a lot of venting, spewing about the unfairness of life and this sick disease.  I don’t want to handle this like an adult, make the most of it, believe all things happen for a reason.  I want to cry like a baby, roll around and pound the floor, throw things, break things, raise my fist to the sky and scream from the tips of my seven terrible toe nails (I had 3 removed as they were beyond terrible).

Before I finished the post, I actually had a tantrum. I yelled, cried, threw my shoe, yelled at my cats, slammed some cupboards.  I threw an empty peanut butter container on the ground and “yelled, we are out of peanut butter”.  Why was that empty container on the shelf anyways?  I really wanted the PB and J sandwich! 

It was a small tantrum considering how much is churning inside me, I didn’t want to scare myself or my husband with the ugliness inside me right now.  I even told my husband he might want to stay somewhere else for a while.  I am afraid of what might come out of me and don’t want to hurt anyone.

It is very possible my brother may not see March.  I know he is suffering physically, emotionally and mentally.  He can’t stand to be dependent on anyone, it is killing him.  And he does not want his teenage kids to see him this way.  I get it.  I do. 

He is ready to go.

How do I get ready to let go?

Half Day Fret Free

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.

To share or not to share

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.

I don’t need a hero, just my brother

When I was younger, and sometimes still today, my family would say “you are so smart”.  Sometimes it was a compliment, sometimes an accusation. I hated it.  Still do.  Sometimes my co-workers say it too. 

Doesn’t everyone want people to think they are smart?  Why is this a problem?  Because it comes with a burden and responsibility I did not ask for.  If people think you are smart they don’t think you need help, or you should have more tasks than others, or make fewer mistakes, people rely on you more as if they are more functional with you around to remember things for them, figure out things for them.  It takes the burden off themselves if they don’t think they have to use their brain if your brain is around.  I did not then and still do not believe I am as smart as people say.  Some people learn better visually, others by doing and others by hearing.  I am someone who can learn all three ways, sometimes I need all three ways.  That makes me adaptable but not smarter.  I think differently than others, have a different perspective.  That’s all.

I wonder how my brother feels when he hears people say he is courageous, that he is their hero.  He is very quiet about how he feels about this disease.  He doesn’t complain, yell, cry out at the unfairness.  I wonder, does he feel he can?  If after hearing how much people admire him, are in awe at his calmness and his courage does he feel he can show what might be seen as signs of weakness or despair?  Will he feel he has let everyone down?  Will he feel guilty that he is not as brave as everyone thinks he is?

He must feel fury, anguish, the unfairness, he must.  How can he not?   Does he feel a burden that he must be the hero everyone thinks he is?  Be strong and suffer silently?

Often times when a tragedy happens to a loved one, everyone talks about how wonderful the person was.  If we are to believe all the interviews of the family and friends from new stories and true crime documentaries, only the good, happy, wonderful, loving, perfect people are killed or die a horrible death.  Maybe that is comforting to those of us less than perfect.  We can tell ourself it won’t happen to us because we are not the perfect human that the victim was. 

Well, I love my brother to death, but he is no perfect person.  This is a good time to remember all the wonderful times, but also not lose sight that he has faults too, like us all. 

So I give him permission to not be a hero.  To let it out, to scream, yell, fall down under the unbearable weight of anguish, to be angry he won’t see his kids marry, be a granddad, that he won’t ever fish again, jog with this wife, play hoops with his kids.  That his family will be less…husbandless, fatherless, sonless, brotherless. 

Permission to just be and know it is ok.  We love him anyways.   Frankly, for me, it will make him more of a hero, and someone I would aspire to be and could be.  Human.

Big Girls Do Cry

I am a big girl and I definitely cry.  I cry over commercials, tv shows (I can’t watch Little House on the Prairie), movies, stories people tell, songs (Tie A Yellow Ribbon gets me every time).  I would say I am normally a happy person but I cry when I am happy, sad, touched, mad, frustrated, tired.  I wish I could say I am so emotional at the thought of losing my brother.  But I have always been a crier.  I CAN say, I am much more emotional thinking of losing my brother.  It hits me at weird times.  So far, it does not hit me when I am with him.  When I am with him I just want to be normal.  We talk, we laugh.  We even talk about his disease, we don’t ignore it.  He tells me he wants to exercise our states die with dignity process and it is like we are talking about the weather.

Until I get alone.  Then I sob. 

One of my sisters counsels terminally ill cancer patients and their families.  On our trip to Yellowstone she said the patients often tell her they think their loved ones don’t care they are dying, that they don’t seem to love them.  Why, because they are not crying.  Then the loved ones say, they can’t cry in front of the one dying because they want to be strong for them.  What strange people we are. 

My parents have always been criers too…well, my whole family is, even my brother in the past though he would try to distract us with jokes or teasing if he felt the urge (I think he used to do this when we were kids watching Little House on the Prairie, damn show).  They seem to be able to cry in front of him.  At Christmas one sister looked on the verge of tears for 2 days.  My parents have broken down in front of him and in front of all of us.   Still, it is shocking to see your parents cry like this.  I have seen them cry all my life, but not like this.  I have an image burned into my brain of my mom helping my brother into the car on our trip to Yellowstone, then covering her face and sobbing in the parking lot.  I wanted to enfold her and protect her from the gut wrenching pain.  There was nothing I could do, not even cry myself.  

Like I said, I always cry, have always cried, still cry, will cry, cry cry cry.  And I still can’t cry in front of him.

If talking scares the fish away, sobbing would make them swim for the hills.

At Yellowstone, my brother and I went into the park very early one morning to be by the river as it got light.  He is a great fisherman and has fished the Madison River before.  Driving through the park in the day time I think he watched the fisherman as much as he did the animals.   He did not want to get out of the car because if there was an animal close by he would not be able to move fast enough.  So we sat in my car, in the barely there light and listened to the river. 

Sometimes he took me fishing when I was little.  Even though I talked like crazy and scared the fish away (of course a big brother would say that).  That morning, I fished around for how to tell him how much I loved him, how sorry I am this is happening to him, how wonderful he is now that I am getting to know this side of him.  He is not perfect for sure, but there is so much more depth to him than I realized.  Probably because I was always talking and he is fairly quiet.

While I was fishing for words, he was fishing the river.  So for the first time I sat quietly while he fished from my car.  Occasionally he pointed out where he would stand, where he thought the fish were hiding, how that bend would be a good spot. 

I found myself fishing too, for inner strength, acceptance, and peace.  What a beautiful place to be able to say “I accept what is happening”.   Instead, I fought crying as I watched him fish one last time.

Who loves you baby?

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

 

Take the stairs, really?

I should have started writing down my thoughts months ago.  I feel like I am catching up.

Back in May I went with my brother to an appointment to pick out a walker.  Talk about a strange experience.   He has always been so athletic.  In Sept 2009 he was jogging.  In May 2010 he needs a walker.  I took him to a few appointments in May.  His determination in getting around by himself is amazing, even takes the stairs.  Puts me to shame.  I avoid stairs.  I should take them but I am not physically fit and am always embarrassed at how long it takes me and how winded I get. 

Yet he did not hesitate.  Elevator right by the stairs, and up the stairs he goes.  So I have to follow.  I am inspired and humbled at the same time.  I vow to take the stairs more.  I work on the 4th floor, I tell myself, surely you can do stairs at least once a day.  Yes I could.  I haven’t yet. 

Shame on me.

Wait, you are out of order

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.

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