The Office Ninja...

Me with a Clipboard - Drawn by my Mom

I have written many times before about always being the one with the clipboard...but that is the life of an Office Ninja.  I don't mind it actually...it is good to be able to what I do best and as a result help people.  From the time I was little...I always dreamed of keeping important paper's organized...so it makes sense that being an Office Ninja was in my future.  I have been lucky...after my Junior Year of High School I got a summer job...and the rest is history.  I have been here ever since.

I think I get nostalgic this time of year because I interviewed in late May...started in June...and most of my big career moves tend to happen in the Summer/Fall.  I'm not anticipating anything big on the horizon...but I can definitely tell that I'm ready to slow down.  I know that sounds strange...and I will always have a clipboard...but the stakes of what is on the clipboard don't have to be so high. 

   

A Dose of Reality…

My pretend pancreas...

So…the thing about Type 1 Diabetes is…it is not trivial.  I have spent almost 27 years trivializing it and I don’t want to pay a price for that.  I don’t keep it a secret.  I’m totally fine with people knowing I have it.  But the question is, do I accept that I have it?  Really accept it?  I wonder sometimes.  I am lucky.  I have an intuition.  I trust it.  I meander through my day knowing (based on how I feel) whether my blood sugar is high or low.  I check it in the morning and then go about my day…never checking it again.  I did a marathon without checking it once.  I always figure out a work around.  It always seems easier.  I can’t keep doing this.  It should not be easy.  It is not trivial.

I am really, really lucky…in my almost 27 year relationship with my non-working pancreas…I have had very little complications.  My eyes have had a few laser zaps to preserve my vision.  I see my Retinologist two times a year to keep tabs on things.  It is all about preservation…things never get better with your vision…but you can keep them from getting worse.  This has been the only complication…until I went on vacation.

It was an amazing vacation.  I think it was the first real vacation I have had since I started working the summer after my Junior Year of High School.  It was so good, I forgot that I got a blister just above my right ankle from an amazing pair of Sandals.  Two days later…it started to hurt…I looked down…it wasn’t pretty.  I went to the Doctor at the Resort the next morning.  I got a prescription for a topical medicine.  I never went in the ocean again.  I just had a bad feeling.  It didn’t get any better.  19 days pass.  I am worried.  I go to my podiatrist…he has to use a scalpel to stir the healing process.  I feel worse…then feel better.  I go back in a week…he has to use a scalpel to stir the healing process.  Are you sensing a pattern?  Like anything…wound healing is a process…this will probably go on for a few more weeks. 

I know things happen for a reason.  I know that things happen when you need them too.  I know that I can’t let this slip by without recognizing the fact that I have been lucky…but luck runs out.  I know this happened because of my Type 1 Diabetes…my podiatrist confirmed it yesterday…after giving me massive kudos for my pain tolerance.  This is a lesson.  Whether I am in paradise, at the gym, at work, at a soccer game…no matter where I am and what I am doing…I can’t forget that I have Type 1 Diabetes.  It is not trivial.

2013 Rewind (May): Under 7 Weekend...

Camp...much like writing, soccer, time with gym and music...completes me as a person.  It is a key to keeping  me balanced.  It is a second family.  It is a different way that give cancer a punch in the gut.  Camp was on my mind this week...how lucky I am to have so many amazing connections with tremendous people...campers, families, and siblings.

This past year, given my crazy schedule for training for the half marathon and marathon, I made the tough decision to not do Camp Fantastic and several other weekends.  I actually only volunteered for one camp event this year.  In fact, my marathon was the same weekend as Octoberfest...one of my most favorite family weekends.  Well, it was my favorite until this past May.  I (much to my surprise) have a new favorite weekend.  Under Seven Weekend!!  It is geared toward children under 7 with cancer but their families get to join along in the fun.  I knew I was matched with the PERFECT Family because the older sister called her baby sister Sissy.  This got me.  Sissy is what my sister called me when she was really little and struggled to say "Joy".  Plus, on the first full day of camp...we were all wearing pink...so you know...we were instant best friends.  It was also the family's first time at a camp event, so that made it even more fun.

I was really nervous because at camp, I'm always a counselor to teens.  In fact, little kids scare me.  So I was truly surprised by how much fun I had, I was worried I would not know what to do.  I conquered a few of my camp fears that beautiful weekend in May...I not only had fun with the kiddos but I also led a song in front of the entire camp.  I had never done that before.  It was awesome.  I got to sing the "Moose Song" which is my favorite and super easy because it is a "repeat after me" song.  I even held a baby goat...I'm not good with animals either.  It was such a relaxed weekend...not as much structure as other weekends.   I am hooked...I can't wait till next May!! 

At every family weekend, I always take a step back and watch how amazing each and every family is.  I can't imagine the weight of all of their worry and all the things they need to manage while caring for a child with cancer and the siblings.  I have seen that strength year after year...and it is awe inspiring each and every time.  I am so lucky that I am able to be a part of such special love.

Everyone Should Know a Joel...

When I was younger, like any Type A, list-making 12 year old, I created a mental list of things that I wanted my life to be. (Truth...I still add to it!!)  I remember thinking that I wanted to have many meaningful relationships with different kinds of people.  Being a socially inept introvert doesn't exactly make achieving this goal easy, but even with this personality flaw, I have been very lucky.  You find the people you are meant to find...when you need to find them. 

I have written about Joel many times...he was camper I met my first year volunteering at Camp Fantastic...and knowing him changed my life.  He was wise.  He was enlightened.  He was okay with whatever his cancer journey was going to bring him.  He was funny.  He had great taste in music.  He adored his older brother.  He made me a sign to hang in my office.  He asked me to dance.  He was Joel West Baillie.  He is one of too many reasons I work hard at work.  He is my hero.

Meeting My Hero's Parents and Niece

In the magical way the world (and internet) works...even though Joel is out and about in the universe...I am lucky in that I have been able to connect with his family over the years.  When Joel's brother Nate and his wife (Karen) were in town a few years ago on New Years...we decided to finally meet in person.  It was so much fun to talk about Joel...we became fast friends. 

This past Spring...Nate and Karen had a baby girl...Joelene.  A perfect namesake...a perfect everything.  I felt really special to receive an invite to her baptism.  I felt even more special in being able to meet Joel's Mom and Dad...in addition to Joelene (of course).  I had corresponded with his Mom via email after she had read several of my past journal entries about Joel a few years ago.  She thanked me again for writing them.  After a long hug, we talked about all kinds of things.  We reminisced about his amazing memorial.  We talked about a camp family weekend that we had all attended.  She was funny and wise...just like Joel.  I talked about my work.  I talked about my writing.  She was so encouraging.  So positive.  So free.  

For a writer, there is nothing more powerful then when someone thanks you for your words.  For me, just knowing that someone reads my words is enough.  I remember at Joel's memorial there was an entire table dedicated to all of the stories he had written.  One in particular that stands out in my mind was an essay...about how he envisioned his life down the road.  At the time, I remember thinking how lucky I was to have so much "down the road" time.  I also remember wondering if I was living it the best way that I could.  I know this much, I'm definitely living my "down the road" time much better now than I was then.

Past Musings on Joel

He would have been sixteen - -  http://joyous-0177.livejournal.com/50369.html

The Joel sign moves again - -  http://joyous-0177.livejournal.com/61968.html

Remembering Joel - -  http://joyous-0177.livejournal.com/82088.html

On being centered - -  http://joyous-0177.livejournal.com/122673.html

First Year at Camp Pictures (2002) - - http://joywizziwa.blogspot.com/2010/08/i-totally-forgot-i-blog-here.html

A year ago...

On the heels of our return from a fun Christmas in Annapolis, our world took a turn. At the time, we didn't know how long the journey would be. We were hopeful. We were realistic. We were scared. We felt lost sometimes. We were tired. But we always had each other...

I spent much of yesterday thinking about this picture...it is from Christmas Eve last year as we were shopping around Annapolis. We had so much fun. We knew that it was essential to enjoy every moment the four of us (Grandma, Mom, Sister, and Me) had together. I don't know if we somehow intuited what the next few days (and ultimately months) would bring or if we just knew that at some point we would not be a foursome so we needed to live it up big. Sometimes you just have a feeling...and you never want to have regrets.

Three days later we hustled quickly to put the new bed set that we had given to Grandma for Christmas on her bed before she came upstairs for the evening. It was frantic really...we had to sneak it upstairs because we wanted to surprise her. As the end of the evening drew to night, she was ready to go upstairs. We had assumed our regular positions...one of us walked backwards ahead of her and one of us behind. She had a bit of trouble grabbing the stair rail with her right hand...which was weird. I suggested perhaps we stay downstairs, but Grandma was pleading with me. She wanted to go upstairs to her bedroom. "Please..."

So we proceeded upstairs, her determination was fueling the journey. She was struggling...but she had a goal...and she was not afraid of hard work. She got just in the doorway to peak in see her bed all dolled up and then we eased her to the floor. We knew what was happening. She knew what was happening. She was having another stroke...and it was very different than the ones before. I have two vivid memories from that night...the sound of her voice saying "Please" and the look on her face when we locked eyes as the EMTs helped her into a transport bed/chair thing. She knew it was bad too.

The time span between December 27, 2010 and March 18, 2011 would be filled with so many moments. The four of us were still figuring things out...together...until we were just three.

On the Way...

I have been so lax in my blogging...but it is because I am working hard...in all realms of life. I had one of those banner days yesterday which has spurred me to blog rather then post a bunch of snipits on Facebook and Twitter. I started thinking about a post that I had written back in May 2010...this was just before my whole life was about to take many unexpected turns. Link to the post from May 2010 Turns that took me off of my OGYST "Operation Getting Your Shit Together"...but the truth is...I knew that I was going to get back to it...but only when I could really focus on it. When I really wanted to get back to it, which magically happened at the end of this past August.

My fondness for lists is going to bring you the following...a list of things that made yesterday so great:

1) Snow: I love it...in any form...sleet, slush, stick...it doesn't matter. It is magic. It is beautiful. It makes me feel like a giddy, little girl.

2) Gym - Part 1: My personal trainer (who I haven't worked with since May 2010) stopped me and reminded that I had one session left and asked if I would like to schedule something. It was perfect timing because I was just thinking that I needed to add strength training back into the mix. I thought S had given up on me, turns out, I think she has been waiting for me to be ready too. I'm sure she has noticed that I'm back in the game, I'm clocking time at the gym 4 - 5 times a week now.

3) Gym - Part 2: All my spa girls where greeting me with enthusiastic hellos and cheers as I walked by on my way to the locker room. It is so motivating...I love that my gym has a spa and how magically all of my favorite people have ended up working there - R, M, and S. They remind me that I am beautiful inside and out.

4) Friendship: I was able to spend quality time with my bestest friends, N. Next to my sister, I think she ranks as one of the most positive influences in my life. It always helps to have a guide who helps you through all of what life throws at you. As we were chatting it, it occurred to me that she has been a constant through most of my "pivotal" life moments. And it is strengthening to know that she always will be...

5) The Beautiful Game: I have written before about how following soccer has helped me in becoming a better me. Watching the University of Maryland Men's Soccer Team is inspiring me to work harder. I'm learning more about leadership and strategy. I'm learning about how important being part of a team is. I'm being reminded about motivation and vision. I'm changing as a result.

I'm on my way it seems, to wherever it is that I am supposed to go. I always have been, but I feel like I am getting closer. And I'm starting to accept that you don't get there alone...

Two Faces Have I...

This past Saturday, I was lucky enough (thanks to a good friend) to see Placido Domingo give a final performance at the Kennedy Center as his 15 year tenure as the General Director of the Washington Opera ends. He played Oreste in Iphigenie en Tauride . It was breathtaking and I still find myself thinking back on such captivating moments. I think I may be hooked. I'm not going to lie, I have already looked at the next season and there are two that I really want to see in the Fall. It was perfection. The story was my kind of story...lots of torment expressed in sounds and actions. I get chills thinking about it...

I have to admit, that during a few moments on Saturday Night I was thinking of my plans for Sunday night...seeing Hangover 2. Talk about opposite settings and opposite emotions and opposite wardobes to boot!! Hangover 2 did not disappoint...it was such a great hour and 42 minutes of constant laughter. There were moments you found yourself laughing even when there was no dialog. The visual situation on the screen and your thoughts on how it came to be made you giddy without breath. I am still humming Allentown...

The truth is, I enjoyed both...one just as much as the other. What does that say about me as a person?

Missing...

I miss my Grandma even though I am easing back into life. Her smiling face. Her spunk and style. Her great sense of humor. Taking her places to do fun things. Yesterday as I walked around Brookside Gardens for the first time...this after having wanted to do so for about 10 years...I wished that I had thought to take Grandma. She would have loved it...there were great wheelchair accessible pathways. It was so peaceful. It was so beautiful. She loved being outside with trees and flowers. I felt bad for not thinking to do it before. As I walked, feeling inept the wind picked up and kissed my face. It was clear...Grandma was walking with me.

The Hardest Drawer for Last...

We were in hyper cleaning mode last week...I think my Mom, Sister and I tried to keep busy and we got lots of things done. As many of you know, I am all about the lists...so you will not be surprised to find out that the first thing I did when we got home after Grandma passed away was to break out a brand new Vera Bradley notebook and start making lists. Sick..I know...but it made me feel better...it was comforting.

One of the items on the list was cleaning out the dresser drawers of my Grandparents. Yes...I admit...we did not clean out those of Grandpa back in 2007. I was deliberate in my cleaning, saving his "junk" drawer for last. Although I should say, there was no junk within. I loved looking through bunches of old business cards, his notes on the scraps of paper he would always keep handy in his shirt pocket, his dogtags, and this piece of paper that I had never seen before. Evidently, on November 1, 1977 (barely 11 months old) I typed this at my Grandma's Office. Pretty cool find isn't it?

Room 11 is Empty...

I don't think my Mom, Sister and I will ever forget the kindness and care at Casey House or the first time we sat at the "Great Table" the day we arrived. There was something so comforting about having a table to sit at there since so much of our family life is sitting at that kitchen table. The feel of a strong table that was able to handle some of the most difficult of days. Knowing that we would soon have one less person to sit around the kitchen table, we decided it was time for a new one. We went from five chairs to four in December 2007 and the thought of one less at the table seemed too surreal. I had ordered a new one and four new chairs on March 3...the night we first sat at the "Great Table" at Casey House.

It was peaceful in the end and the road to get there was traveled with strength...my Grandma is and always will be...amazing. Her spirit and spunk brought her to DC from a small town in Vermont. Her spirit and spunk guided her on Friday evening. As I have always written...this is no place for whimps.

Our new table and chairs were delivered on Saturday afternoon...the start of a new begining. It was poetic. Room 11 in Casey House may now be empty but we are not...our hearts are full with memories and a certain calm that comes from knowing that there is one more person out and about in the universe looking over you. It is warm. It is comforting. It is real. And we have a strong, sturdy table to come back too as we move forward.

A Smile and A Wave...

I have been meaning to write about a few things I have observed during this latest chapter of our lives. The one where everyone knows your Room Number and not your name. The one where everyone watches for which rooms become empthy. The one where sometimes you can here someone say, "Well...Room 7 is still here". It is like there is a cohort...of both room inhabitants and thier families. It feels like bizzaro world sometimes but has become like home...sort of.

Even though we are in a hospice facility, I still smile and laugh. Sometimes people look at me like I am weird (I know...I know...people always look at me like I'm weird). I make jokes. That is how Grandma would want me to be. She has a great sense of humor...so why not keep some happy around us. There is no right or wrong in this dance.

Several times as I sat in my car atop the hill of Muncaster Mill Road to turn into Casey House, a car coming in the opposite direction would stop and wave me in...even though they had a green light. It was so profound...they knew where I was going...and took an extra second out of their day to make it easier for me. It happened more than one and it made me feel good each and everytime.

You smile and wave to those you run into on a regular basis. It hit me today while I was there that I missed the family in Room #9...we shared the table one day at lunch time with them. It made me stop and realize that our cohort is growing smaller.

The Things You are Supposed to Say...

We refer to them as the "Hawaii Papers". It is information that my Mom found back in 2007 which explained the process...caring for the dying. These brought great comfort during my Grandpa's last days...even though we didn't know they were his last days. Our intuition more than anything clued us into the process...and my mantra then was to "trust the process." This experience with Grandma is totally different. We know we are in the delicate space which leads to the end. Needless to say, the "Hawaii Papers" have again helped us. This is no place for whimps...authenticity is required.

There is one section of the guide, Preparing to Say Goodbye, that lists the five things a dying person wants to be assured of. The list is as follows:

* Things they were once responsible for will be taken care of.

* The survivors will survive without them.

* All is forgiven.

* Their life had meaning.

* They will be remembered.

It is strange to think that a list of 5 things holds the power of a peaceful passing on to better things. I can also imagine the difficulty and weight of each of these five things being different for everyone. I don't know why I am writing this, maybe it is bringing me comfort. Writing is healthier than eating carbs. We have done the assurances so that Grandma can let go. Thinking about writing helped me to think of what I could say. Writing about all of this in my blog helped me to form what I would say.

I'm sitting in the window box seat here in my Grandma's room at Casey House, my laptop warm, listening to her breath. My family and I are watching a process...and even though it is hard and not what one expects to have to go through...I know we will remember these moments always and be glad that we had them.

Love in the Room...

It is hard to believe that it has been a week since Grandma arrived at Casey House...in keeping with my previous blogs...hospice is no place for whimps either. It is still surreal being here, especially since I looked into volunteering here back in 2002. I then got busy with my MBA and it kind of fell off of my radar...and now here we are. I don't know that any of this has fully registered with me. It is so quiet. It is peaceful. It has become like our home. Her room is the place we circle around...rather than the kitchen table at home.

This picture of Grandma was from around her birthday in 2009...cute right? It was one of those random moments when we were sitting around in our "home office" chilling...waiting to leave for dinner. We were headed to Grandma's favorite restaurant...the cabin in the woods...Tower Oaks Lodge. It is one of my favorite pictures because it has such a warm "homey" feeling with pictures of our family in the background. Even though we are a small unit, we are surrounded with love. It seeps in and around us...especially in this room. At somepoint we are going to be smaller, but I don't think we have any less love.

Bear Claw Fan...

There are so many things that I could be blogging about...this span of time that we are in. I just don't feel up to it, but believe me, I'm scribbling notes in a journal that I have been keeping over the past few months. I have always marveled at the idea of hospice and palliative care. To see it before my eyes makes it all the more amazing and beautiful.

Speaking of beautiful, check out this cute picture of Grandma from November. We had the day to ourselves...which began at the kitchen table where I had surprised her with her favorite pastry treat...a bear claw!! Also, note the cute Vera Bradley scarf she is wearing...ahem...adorable right? One of my favorite stories that Grandma used to tell was about breakfast during one of countless weekends that I spent over at Grandma and Grandpa's House. If I could, I would seriously worm my way into it each weekend. I liked to weekend in Chevy Chase apparently. ;) Mainly, I just loved spending time with them...and they fed me well...and they let me stay up past my bedtime.

The breakfast tradition when I would spend the night entailed Grandpa and I going to the Westbard Giant to get doughnuts while my Grandma made the rest of breakfast at home. It makes me smile just to think about it. One morning, after Grandma placed my plate of scrambled eggs in front of me I said, "I like your eggs Grandma, they are not brown like Mom's." Can you imagine? (Sorry Mom...you make amazingly fluffy yellow eggs now...they were brown because you had two little kiddos and a crazy dog yapping at your heels.)

In these times, I'm thinking about all of things from before and not about the fact that where will be an after.

Two Months...

Two months ago...everything was different. We had come back from Christmas in Annapolis after having an amazing time. This is a picture from Pusser's the morning we left. Our sweet girl was able to get around with a walker around the house, only using the wheel chair for the long distances. Doesn't she look cute in her Lily Pulitzer? My Mommy got her this for Christmas...if you could see them...she was rocking a cute pair of Coach Sneakers. The day after this picture was taken...at 11:15pm...she had a significant stroke. Since then...we have been on a rollercoaster...which most of the time is really like a game of Chutes and Ladders...a constant up and down. We are taking it as it comes...but our sweet girl is tired...and our goal is just to keep her comfortable.

Watchful Watching...

All I can do these days is what I call "Grandma Watching"...I watch her sleep, I watch her stir, I watch her watch me. It is hard...I can't stop looking at her because I know there will come a time when I won't be able to look at her anymore. I don't want to forget yet I don't want to remember now. I want to remember anytime before December 27, 2010. Like this picture from July 2009 while we were in Baltimore. Laughing, Smiling, Charming...our Sweet Faced Girl.

Sweet Face...

My Grandma's nickname for me has always been Sweet Face. I'm not sure where it came from or how it came to be...but now it is all I can seem to call her. Every year at Christmas, we would always know which presents where from Grandma and Grandpa. Not just because of my Grandma's beautiful penmenship...but because it would be addressed to Sweet Face or Little Bits. Little Bits being my sister of course...

The one thing that hasn't changed over the past many weeks is my Grandma's adorable grin. She is so gosh darn cute...such a sweet face. Today was a more awake day then a sleep day which meant there was more time for interaction. Somehow, someway we can connect with Grandma even though she can't talk. We make her smile...and that is enough for us. Her Sweet Face...which my sister pointed out now really looks like this adorable picture of her from when she was three years old. Adorable then and adorable now...

15 Hour Mini-Vakay...

We are nothing if not efficient...and I was really proud of the three of us for taking a bit of a respite late on Sunday and into Monday morning last week. It was obviously meant to be...because it all happened so easily. Well...after my sister took the reigns and made the main event possible and for some reason decided to get three tickets. With the addition of reward points which allowed for a free hotel room at the Mayflower...we couldn't not take a quick little break. It was perfection. Even down to an amazing picture that was in our room combining two of my DC Favorites...cherry blossoms and the Jefferson Memorial.

When word came out about Henry Rollins doing a 50th Birthday Show in DC on his Birthday...I knew I had to get tickets. Except, the day of the pre-sale I got busy at work and didn't go to the site to get tickets until 50 minutes after they went on sale. They were sold out!! I was mortified...I was going to miss Henry. But then, in perfect Henry style, he added another show on the night of his birthday. My sister got tickets...three of them!! So my Mom, Sister, and I could all go. He did not disappoint. He never does. His shows always have a perfect arc...and you learn something. Sometimes more than just one thing. I think my favorite part was him reciting the Preamble to the South African Constitution. Beautiful. My favorite line..."Improve the quality of life of all citizens and free the potential of each person." It doesn't getting any more to the point than that.

Catch All Post....

I am behind on my blogging but mainly because it is just so hard to know how to blog about everything going on. Especially when you don't really know what is going on. The rollercoaster continued last week...the long and short of it is that Grandma is out of the hospital and back in a Rehab Hospital (the one where she was this summer). She is fightening an infection and needs to be on IV Therapy...we could not do that at home. Our goals are to keep her comfortable and loaded with plenty of TLC. So, our time is clocked at the Rehab Hospital instead of at home. Many times it is just watching her sleep...but when she wakes...she has a loving, familiar face to greet her. Have I mentioned how amazingly strong my Mom is lately? We just go moment to moment...that is all you can really do.

I hate to say that the past many weeks have taken a toll, but they have lead to a few amazingly funny stories. It is pretty hilarious what happens when you are running on empty. It also pointed out that the short respite we took on Sunday Night and Monday Morning was probably a good idea. I need to blog about that one next. ;)

So a funny thing happened on our way to the Rehab Hospital on Saturday...we left my sister on the curb. I kid you not. It was not until my Mom asked a question and she did not answer that we even noticed she was not in the car. I looked in the backseat from the rearview mirror...and it was empty. Can you imagine? My mom always used to say that after she had my sister her biggest fear was forgetting that she now had two children and that she would leave my sister at home. Well, it finally happened...30 years later.

What do you think we did when we realized that my sister was not in the car? Panicked? No. Worried? No. Laughed our asses off? You guessed it!! We were in tears with laughter by the time we turned around to head back to get her. How in the hell did we do that? We just got in the car and did not wait for her to get in and I just drove off. We are so lucky she didn't get hurt. We chalked it up to just how bad off we are at the moment. It is taking a toll...but we can still laugh our assess off about it!!

Gah!!!

I had all good intentions for writing tonight...the title was going to be Chutes and Ladders...I was tired of the Rollercoaster analogy and wanted to go for something different. I'm too scattered to even begin to write tonight about the happenings and developments from today. I will tell you one thing...it has made me rue the day when I would make snarky jokes about not really having to worry until the Infectious Disease Doctor comes a callin'...the same one from when Grandpa was in the hospital in December 2007. Me and my freaking intuition...which spills out even when I think I am joking. Gah!!!!!