I can never look a PB&J in the eye again

Been craving PB&J sandwiches the last few weeks.  Don’t get me wrong, I love them, and that should be enough of a reason to crave them, right?

But, as I opened the cupboard to make a sandwich it hit me.  Two jars of peanut butter stared back at me.

The last time I noticed there were two jars of peanut butter it was not my proudest day.  Back then both jars were empty and I cried.  And cried.  I think I may have thrown one on the ground (plastic, thank goodness) and shook my fist at the sky.

Now I do love peanut butter, but really, I don’t looooooove it…not enough to cry about it.

Just like two years ago, I am reaching for some comfort food.  THE DAY is getting closer.  It can’t really be two years.  It feels like forever.  It feels like yesterday.

I can’t believe it has been nearly a year since I posted.  I started one after Katelyn’s wedding.  It is still in draft.  Someday I will finish it.

I think of him every day.  I hear him laugh when something funny happens.

And in case you are wondering, I make sure we are not out of peanut butter since that day.

(link to my tantrum post, even though I freaked out that day, when I told some friends about it we ended up laughing.  If you hear someone ask me how many jars were there and I say “TWO!” and start laughing, you will know why)

https://grumpybutterfly.wordpress.com/2011/01/22/tantrum-thy-name-is-me/

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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

I have no title

I don’t remember Christmas 2010.  I got home Christmas day and realized I couldn’t really remember the last 2 days.  Everything was a blur.  I had a couple of memories but not many.  So my last Christmas with him is full of holes.

My first Christmas without him?  Also full of holes but of a different kind. 

His absence weighed heavily on my heart.  But I heard him in the laughter, saw him in his kids, felt him while helping to make the cinnamon rolls with Polly, heard him giggle as we played games, and honored him with the candles we lit in his memory (thanks Bec).

Seeing all our candles together was one of the most symbolic moments of my life.  I felt  I could put all my loss into the flame and it would hold it for me so I could enjoy the holiday.  I knew I would take it back later, but for a moment I could let the flame carry it for me.  All those flames was like one big, warm group hug.              

(picture from Mitch, lovely)

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.

In Your Living Years

Why, I ask, am I here?  In your living years you asked me to go to Sun Valley with you and your family many times.  I never did.  Why…Look at the name, “SUN” Valley.  I knew it would be hot.  You know I don’t like the heat.  Or hiking, biking, running, tennis, any number of other things to do in Sun Valley…any kind of exercise really.  I never could figure out why you wanted me to go.  Probably to share the price of the condo?

But here I am, in Sun Valley.  Hiking.  In the sun.  Not in your living years.  Why?  To help spread your energy in this place you lived, laughed, loved.  I wanted to be part of this…I really did, but I did not want to hike to Baker Lake.  Before you left us I asked if you would want part of yourself to be taken to Yellowstone.  That I could do, I can drive there.  No hiking required.  But no, you just wanted to be left at Baker Lake. 

I was not sure I could do this hike.  I came, but I expected to either wait at the house for everyone to get back…or maybe try to hike but stop part way and read will everyone came down.  A couple of days before the hike I had a dream.  In the dream we were trying to get you up a river bank.  We laughed so hard because you kept making jokes using one liners like “with a little help from my friend” or “lean on me”.  The whole dream was pulling you, and laughing so hard we would fall back down, in the mud.  I woke up laughing.  You motivated me to do try the hike I was dreading so much.

I talked to you as I hiked, relived memories, and I cursed you a few times.  I really don’t like to hike.  Give me strength to finish Steve.  Why in the hell did you choose this place? Remember when you took me to college with you?  How about our joke when you would call me on the phone and ask me “Who is this?”  Another fly just bit me, thanks Steve.  I miss the way you tell a story, the way you giggle.  I hope you know how much I love you, look, I am hiking for you. The dream of you laughing was such a precious gift.  Help me finish this hike.  I hope I brought as much joy to your life as you brought to mine, still bring to mine.  I miss you, really I do, but this lake better be worth it.  Was that another fly?

The hike was worth it, eventually.  And the lake was beautiful.  I took many breaks to catch my breath but I didn’t mind stopping so many times.  Each pause surrounded me with butterflies.  And huge biting flies, which I tried to ignore.  There were butterflies, everywhere.   When I finally got to the lake I imagined you would have giggled a little at how long it took me.  Not a giggle to mock me.  But still a giggle.  Bec and Polly said you would have been proud of me for finishing the hike.  That was interesting to think about.  I don’t know if I ever made you proud.  Were you as proud to be my brother as I was to be your sister?  That would give me something to think about on the way down…which also took me awhile.

Leaving you at Baker Lake fitted.  You will be at peace, forever fishing.  As Ken went out on the lake to spread your ashes there were times he almost looked like you.  I hope you were with all of us as we wrote our messages to you on rocks and tossed them in the lake to forever with you.  I hope you heard Maddie’s song to you, it was perfect.  There were many people there to send you off, and many more that wanted to come.  In your quiet way you had a huge impact on so many.  The generosity of Polly, Kellen and Maddie is amazing.  To let us all share this moment with them.

I did not like Sun Valley.  I am glad I went though as I got to know more about you.  Polly pointed out all the things you guys would do here.  I was struck again with how much you truly and completely lived.  In your living years, short as they were, you lived life more fully than most people will do in several lifetimes.   Even the days you said good-bye to everyone were full of laughter and living. 

In the living years without you, I will try to never forget the life and energy within you.  I will always try to make the most of my living years.

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?

Translating love.

I am reading a book about the language of love, how people express their love for others and I think how people interpret how they are loved.  The book says there are 5 ways we express love:

  1. Affirmation
  2. Quality Time
  3. Gifts
  4. Acts of Service
  5. Physical Touch

My way, not sure yet.  Depending on the person I think I do all of these.

How does my brother express love, I think acts of service or quality time.   It is definitely not affirmations or physical touch (he is a one arm hug kinda guy).  He gives laughter, bakes, remembers small details about someone, helps in times of need. 

Right now we shower him in all forms of love.  We are drowning him with it, desperately trying to find ways to show we care, how much we care.   He is probably tired of it some days, overwhelmed with the level of attention.   But I can’t help thinking what a privilege we have to be able to do this.  Even if we are going a little overboard and annoying the crap out of him.

And while he is flooded with all our waves of love I also think how lost he must be thinking he no can no longer show his love.   He really hasn’t lost it, but he probably thinks he has.    He can no longer do as much for others, but he can still give quality time.  He feels like people must be bored spending time with him now.  What he does not realize is the time we spend with him now is so important, at least to me.  None of it is wasted.  Even if we just sit and watch episodes of Glee.  Every second is worth it, he is worth it.

He knows how much we are all crying, how that must crush him.  When he has spent so much time showing us his love by making us laugh, it must drive him crazy to hear our hearts breaking.

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.

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