Avoiding the Past (tense)

A year has passed.  My dad did a great blog of our day 2/18/2012…so rather than compete with my dad (hard not to do, we are a competitive bunch) and recreate the day myself, here is a link to his blog post  (Just between you and me, I would probably win.  Not that we are competing or anything, and it is not like I have to win.  It is just better that I do.  His ego is big enough already, we have to keep him in his place.  Mom needs all the help she can get.)

http://skinhorsereal.wordpress.com/2012/03/01/the-deceptiveness-of-dread/ 

I usually write a post and re-write it over several days before I actually post it.  And as some of my subscribers know, I post and then usually make changes almost immediately.  This is the first one I wrote and posted in the same day, so if it jumps around some, that is my excuse.

When asked how many siblings I have, I say 3.  I still have 3.  Will always have 3.  No amount of time will make that number decrease. I find it is hard to refer to Steve in the past tense.  When I talk about him words like “used to” or “had” don’t sound right.  Nor does adding “ed” to words make any sense.  I don’t say “I loved him” because the love never stopped.  I love him.  Simple.

To me he still is.  He IS a fisherman, an athlete, brother, son, husband, father, friend, baker, prankster, promoter, cousin, uncle, nephew, brother-in-law, son-in-law, story-teller, shit starter (yes, I went there…you all know it is true).

And teacher.  There are so many ways he still teaches, not only us but people he just met for a brief moment and people he never met.  I am touched over and over by how much he impacts others.  Makes me realize we don’t often know what others will remember about our interactions.  Probably not how our hair looks (Yes, have to mention the hair.  It is always on my mind, no pun intended.)  Or whether our shoes matched, and I don’t mean match the outfit, but match each other (I don’t know how I made it out the door with two different shoes.  In my mind I told Steve about my shoes and heard him laugh and laugh.  That laughter, though only in my head, was worth looking like a fool for a day).  Maybe people will remember our witty comments, or sarcastic remarks.  Hopefully we will be remembered for our compassion, generosity, and heartfelt kindness that surprises the giver as much as it surprises the receiver…we don’t always know what we are capable of till we reach beyond our comfort zone (I know you will like that one dad, you risk taker you).

And Steve is still full of surprises.  Visiting us when we think we are alone or when we dream.  Sometimes startling us, sometimes making us laugh.  Sometimes just calling out our name, maybe to remind us we not as alone as it feels.  He still tries to comfort us the only way he now can…even if it freaks us out a little.  Actually, he probably likes that he makes us jump every now and then.

He is all he ever was, but I don’t think he is all he will ever be.  Holly found an article written about him in April 2010.  A man commented on the article in November 2010 after having sat by Steve during a flight back from Hawaii.  A total stranger, but after having spent 5 hours next to Steve this man states he “is a better person from having met Steve”.  Five hours and this man was touched by Steve.  Most people don’t leave that kind of impression after 5 years.

That kind of magic never fades, and I am oh so proud every day to be his sister.  (Sorry to those who have to keep hearing me brag…just kidding, I actually am not sorry because I am going to keep doing it.  You have been warned.)

A few bragging articles:

http://abcnews.go.com/Health/MensHealthNews/rare-disease-forces-popular-teacher-retire/story?id=10429408

http://www.komonews.com/news/local/91524984.html

http://www.issaquahpress.com/2010/06/15/never-say-quit-teacher-leaves-a-final-lesson/

http://www.flintofts.com/  This is still available, including the guest book comments

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.

Just My Imagination…

Yesterday was my dad’s birthday.  I wanted to ask him what it was like.  The first one without Steve.  I didn’t even mention his name.  Sometimes I am not sure if I should talk about him, maybe it will make someone cry…make me cry.  But if I don’t talk about him does it look like I forgot him?  But if I talk about him too much will it look like I am obsessing?  If I don’t, does it look like I don’t care? 

So I didn’t mention his name.  I didn’t ask what it was like to have a birthday without him.  I just pretended it didn’t happen.  Chicken.

But today, Chris and I went to the cemetery to see Steve’s plaque.  Can’t pretend there. We just sat on the bench and I cried.  It still does not seem real.  It can’t be real.   This was not supposed to happen.  I cannot imagine him gone, and I can’t wish him back.

I don’t know how long we sat there.  The tears just wouldn’t stop.  I used to make a lot of noise when I cried hard.  Now it just seems like the tears silently pour down my face.  The plaque says “Always in our hearts” which is perfect.  He is in my heart.  I thought my heart was incomplete, but it can’t be with him still there.  All the pieces are there, but it hurts.  What I found is my heart is bruised. 

Later we walked around town a little, visited the creek Steve used to fish.  Chris pointed out places Steve used to take him fishing when we were young.  Another thing I did not know about Steve until recently…he used to take three of my guy friends fishing when we were in elementary school and Steve was in high school.  How cool is that?

I find myself wishing I had more imagination.  I could use my imagination to revive memories I did not know I would need later.  Memories of things forgotten long ago that I did not know were important.  Memories of him I did not know would be so treasured now that I can’t create more.  If I could have imagined ever loosing him so early, I could have written down every story he told, every funny moment we shared, every trick he pulled, every giving gesture he made.  I could have recorded his giggle that I miss so much.  

Better yet, I could have imagined a cure and we would not have lost him.  Imagine that.

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?

Regrets begone

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. 

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.

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.

I thought I knew my brother, not.

In April 2010 some people organized a fundraiser for my brother.  He has to stop working and there are things they will need to do to their house to make it more habitable for him.  And they have 2 children in high school who will probably go to college. 

Can I just say “WOW!”  On the website announcement they had to cut the RSVP off.  Too many people planning to come and the place was not big enough.  Between donations and silent auctions over 90,000 was raised.  It was amazing.   He said it was like being able to visit your own memorial.

He is not a social person, hates the small talk.  Yet he knows more people than I do.  I looked around and thought that if this were me, would this many people show?  I don’t think so.  He had thought at one point in his life to be a preacher.  That is not the path he ended up following.  But I think even if his profession was not a preacher, he touched so many people’s lives in such quiet and meaningful ways that he definitely ministered to them.  And I don’t mean about religion.  But about what it means to be a human being worth knowing.   I heard about things he did for people, things unasked for or unexpected, ways he helped pay for things people couldn’t afford.  He never mentioned any of this to me, probably not to many others.  He just quietly did what he felt was needed for others.

I know my brother as a prankster, sometimes cheater at games, liar to get his way.  I know him as a cook for his family, fisherman, teacher, a devoted father, and many other ways a sister knows her brother.  But I got to know him that day as a humanitarian.  He was beautiful.

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