Wednesday, August 27, 2014

Almost there - I can practically taste school starting!

It's not that I'm feeling uninspired - mostly it's the my days have been PACKED with life these last few weeks.  This is a good thing, of course.

Last week, I got an email from the PTA at Barrett, the last school Connor attended.  I don't remember getting a single email from them after he passed away.  I mean, I know I got many messages and cards from the Barrett Community, but I don't remember getting any all-PTA member-this-is-what's-coming-up emails.  At first I was annoyed - reminders are hard.  Then it occurred to me that (a) the PTA administration would be horrified if they knew and that (b) a computer cannot know to remove you from a list.  I used the unsubscribe function.  So far, no additional emails.

The last bandage has come off, and my nose looks a little injured but essentially the same.  Tucker said, "Mom, it's a brand new nose!" and smiled at me.  I should be happy that he didn't recoil in horror I suppose.

The boys are getting ready for the new school year.  I am getting ready for them to be there.  Weaning them from screens is going to be difficult, but I shall try.

Off to buy Drew "cool clothes" to wear at school.  I am sad but not surprised that he is falling prey to the "cool clothes" pressure.  For a boy who spent most of the first two years at preschool in a princess dress, this is a major change.

Wednesday, August 13, 2014

Security Blankets

It's been a rough few weeks, of course.  Recently, I've been getting very concerned about Drew.  He's headed into second grade, and less than 2 months from turning 8, and we can't get him to stop sucking his thumb.  I'm seriously starting to consider hypnotism for him.

It's been a hard year on him.  He's borne a lot more than your average 7 year old, and mostly with exceptional grace.  He's not a major tantrum-thrower.  But his Woobie is disintegrating in front of his eyes.  Woobie, for the uninitiated, is the blanket that my mother knit for him before he was born, and was named after the blanket that the youngest child of Teri Garr and Michael Keaton in Mr. Mom, that excellent 80s film, totes around.  Lee and I just called it that, and then one day, so did Drew.  So he was named.

Woobie is loved.  If you ask Drew what is Woobie made from, the answer is always, "Yarn and love."  And he is right.  Drew unfortunately is also a fidgeter, and so he sucks his thumb and picks apart the stitches, and poor Woobie is shredded.  Mom has repaired him (yes, Woobie is a boy.  Of course.) multiple times but he is beyond the scope of knitting needles now.  It breaks my heart.

Today I got to see my nose for the first time since the surgery.  There is a jagged criss-cross line running up my nose where the surgeon pulled the skin together to cover where the bad skin was taken from.  I was thinking about it on my way home from the office, and that I lacked the right amount of skin to cover all of my nose, so they had to push and pull and move things to make it cover, just barely, until my skin did it's thing and healed up.

My nose, a new metaphor for the security blanket that won't cover all of you any more.  Because you have grown, or because you have picked it apart, or because of both.

The jagged appearance will fade, leaving only a fine line in it's place. The scar can be hidden.  But it will always be there.  Much like the scars inside me, which are hidden away from easy view much of the time, but they are there, and when I bump against them emotionally, it hurts so much.

I"m getting awfully tired of losing this year.  I am looking for a win.

Monday, August 11, 2014

But you keep it all inside...

Today, the boys and I had to take Lee to the airport and send him away for 5 days this morning.  I acted fine, but I was internally very nervous and a little edgy about it.  I remember when I was young my father traveled a lot for work, and it was normal for him to be away.  Lee and I have each had numerous business trips over the course of our careers.  No bigs.  Except this will be the longest that I have spent away from him since Connor died, and what it reminds me of is the week we spent together after he left, where we didn't spend more than 30 minutes away from each other.  Our internal workings kept up in very close proximity.  I can't speak for him, but I didn't want to do ANYTHING far from him.  I don't like him being so far away now.

But we tried to make it normal, and went about things.  After work, I came home, felt accomplished, made dinner, we ate together.  Lee FaceTimed in to show us a puppy (ADORABLE in case you were wondering).

I went to put this kids to bed, and grabbed my phone because it chirped.  It said to me that Robin Williams had died.

How weird that I feel so affected by this.  It's not as though I would have listed him as a favored actor.  He's definitely not a favored stand-up comedian. I appreciated his art, and he was really good at what he did, and he took it seriously and he wanted to be so, so, so good.  He worked at it.  He did what many comedic actors did - took the funny roles until he was permitted to prove his range with dramatic ones.

I went to see Billy Joel recently, and he was amazing.  He is 65.  I saw Seinfled 2 nights ago, and he was hilarious.  He is 60.

Robin Williams was just between them age-wise, and plagued by addiction.  I don't know why it's hitting me so hard, but it is.  I am sad to see the artist who created Mork, Mrs. Doubtfire, the Genie, and so many other wonderful, life-filled characters sad and broken and gone.  The Birdcage, where he was so full, and truly engaged fully in his character.  For most of the movie, you aren't thinking "Oh, I'm watching Robin Williams" as you could so easily in many of his roles (the exception is this scene, which is wonderful  And that 20 second moment of ROBIN WILLIAMS ends with him saying "But you keep it all inside."  It's definitely a funny moment, but those words now: But You Keep It All Inside.

Many of is keep it all inside, and see what it can do to you?  I was letting fear that I kept inside shield me from enjoying these days with my boys, challenging though they may be.  The boys or the days - take your pick.  I'm not creating art with this life, though there is some art to it.  I am helping my sons create their lives, and keeping it all inside is going to show them the wrong attitude in my opinion.  Yes, of course they need to learn appropriate behaviors, and social norms, and all the things that will help them grow into fully functioning, contributing members of society.  Naturally.  But they also need to learn to speak for what they believe in, and that keeping it all inside won't necessarily mean that they have excellent self-control.

It's time for some big girl pants.  Daddy went on a trip.  Yes, we all miss him.  He'll be home soon, though.  So let's live some while he's gone, and not keep it all inside.

Sorry.  I know this blog isn't about famous people dying (though my family will tell you that part of my 1/5 that I contribute is, in fact, celebrity deaths); it's about my son, and his death, and my reaction to it, and to a certain degree, my family's reaction.  I'll go back to topic soon.  Tonight, I'm going to have a drink to our Captain, who when I was in high school told his students to rip pages out of their textbooks and experience poetry and life in their hearts and minds, to stand on their desks to gain a new perspective.  The movie, featuring my friends, classmates, and filmed in my home state.  I loved it (and was sad not to have the chance to be in it).  Thank you, boys.  Thank you.

Wednesday, August 06, 2014

Positive Outcomes

First of all, for each and every one of you who rhapsodized about me the last few days since the interview and article on facebook, Twitter, etc, thank you.  I don't feel especially magnificent or different from anyone else.  If I were in your shoes, and you were in mine, you can bet your bottom dollar I would be rhapsodizing about YOU.  You guys are the bomb.

Yesterday, my last full day with squamous cell carcinoma, I went and visited my old office after a lunch with a friend.  When I walked in, I had a chance meeting with one of the legal assistants, who I was delighted to hug and accept condolences from.  Then, while waiting for my old colleague Stephanie to appear, one of my favorite IT people (hint: they are ALL my favorites) popped into the reception area and found me.  His son also had a seizure disorder that they were treating with medications, therapies and the ketogenic diet.  (Look it up - it has great success with some people, and no effect with others.)  Anyway, he came over and said hello, and then said, "Colleen, we're seizure-free.  Off meds. Regular diet."

I almost started crying.  I told him it was absolutely the best news I could have ever hoped for.  I asked how his son was handling the changes, and he is THRIVING.  If Stephanie hadn't walked out into the reception area with a bucket filled with 2.5 pounds of only banana Runts.  All for me.  THE BEST.  I want some now but they are all the way downstairs...

Anyway, so the surgery was pretty good for the most part.  I mean, as surgeries go.  But the music was very 70s, and not very 70s rock.  So that part was pretty awful for me, but a good distraction.  It took a few hours for me to realize that I was the youngest person there by at least 25 years.  Ahead of schedule.  Precocious!  But the music selection was pandering to them, not me.  It's okay.  I did get to hear some gems I truly love, interspersed with Carly Simon (UGH) and other, um, artists.

As I sat in the chair, having been checked, then numbed, the doctor asked me to describe how I came to notice it, so I told him about the weird thing I noticed in January and then re-noticed in June.  In between?  I said, "well, it's been a complicated year."  Why has it been complicated asked Dr. Stranger (not his real name).  I laughed a little.  He said, "Give me the cliff notes version."  So I said, "Well, in January I had 3 children, and now I have 2."  Total, utter silence.  He put his hand on my shoulder, and then the nurse on my other shoulder.  He said after a moment, "I'm so sorry."  I gave him my new catchphrase, "Pretty weird when being told you have cancer isn't the worst thing that's happened to you."  Then they did nothing for another minute.  Just sat there with me laid out in the chair, their hands on my shoulders.  Finally, the doctor said, "This is the second time this week I have made someone cry in this room!"

I said, "I'm not crying.  Let's get this done."  That was a lie.  I was crying.  But much like the times when Connor was sick, it didn't matter if it made me want to cry.  I had to suck it in and get things done.  Today, the Thing to get done was to get the cancer cut out.  It took three tries, but he got it all.  I wanted to say, "Hope to see you never..." to him only because I didn't want to have to go back for similar surgeries in the future.  He beat me to the punch - I'll see you next week to look at the incisions/wound site.  They had to cut a small football shape into the skin at the bridge of my nose, so then they had to manipulate a lot of skin to cover up the skin area that was lost.  Know what I could do the rest of my life without feeling again?  A needle in the tip of my nose.  That smarts.  OOOOOOOOOO boy!

Anyway, through it all sat Lee, waiting patiently for me in the reception area with his iPad, phone and an amazing attitude.  He drove me there without complaint, home without complaint, and is on a bike ride now.  I would like for the remainder of this month to be low key.  Any assistance with that would be most welcome. If you see me in the next few days and I look pretty rough, take pity.  I can't get the bandages or wound site wet, so it's old fashioned bathing and (gasp) sink hair washing.  It's like Little House on the Prairie here.

Sunday, August 03, 2014

My Love Is Too High

For possibly the first time, I am writing this without giving it a title first.  I just can't think of one that will encapsulate this week yet.  I may not.

In a nutshell, these are the things that happened:
1. I called the insurance company to see how much of the procedure to remove the last vestiges of my teeny cancer.  During the automated portion of the call, the female robotic voice (or, as we called the voicemail lady in college, Sylvia) asked me to give my birthday, "For example, February 9, 2007."  Thanks, Sylvia.  I needed the reminder of Connor by you randomly selecting his birthday (not year, at least) (and also, what seven year old calls the insurance company?  I mean, wouldn't it make more sense for the year that was randomly selected to be one that indicates an adult?) while I'm calling to talk to someone to see what of my cancer treatments are covered.  Awesome.

2. I played a gig and helped the Arc raise $2000 in support of their efforts for individuals and families with disabilities.  During that gig, I cried a little but luckily not while singing, I saw a lot of friends I needed to see, and I accidentally fell into an opportunity to help raise even more awareness for the Arc.  And also, it was a beautiful night out.

3. I was asked to and did an interview with CBS Radio (to be broadcast tomorrow morning, Monday 8/4) about the Arc and my family and Connor.  It was hard, but it was so important.  We fell into knowing about the Arc after an offhand comment to someone who happened to know them.  I said in the interview - when you are suddenly handed a serious, life-altering diagnosis, there are so many new things you have to learn and to adjust to, and the most likely reaction is to internalize everything.  You have to learn about the diagnosis, the background, get additional doctors, realign your life.  People want to help you and offer to bring food, take the kids, run errands.  One of the most helpful things I wish I had known about was the Arc.  It will be my go-to from now on.  Everyone should know about the amazing people there, and how they assist and advocate.

4. Megan came to visit after a whirlwind trip to DC.  Seeing her smiling face as she drove up was one of the best things I've seen all year.  However, it arrested to me that as we stood together on the front yard, she whispered as tears poured out of us, "I don't think I can go in." I forget so often that I am in a different place than many, but she was about as close to Connor as our family was, and she hadn't yet crossed the threshold of our now-Connor-free home.  I said, "Take your time."  Eventually, we went in, and had dinner like we did so many times after therapy, and she admitted that she'd tried to maintain a professional distance when we would invite her, every time, to stay for dinner.  We blew through her resistance many, many times, and I'm glad that Lee's cooking helped break down that wall.  She played a little with the boyos.  I think Drew was having a hard time with it because he remembers her much more than Tucker does.  Drew was there through so many therapy sessions.  He doesn't like to talk about Connor's death.  He is fine talking about Connor, just not about his passing.

5. Sunday afternoon conversation last week:
Tucker: Wouldn't it be great if we asked Santa to bring us Connor for Christmas, and HE DID?"
Me: Well, that would be miraculous.
Drew: He can't do that - that's not the kind of magic Santa has.
Lee: silent - hiding in another room
Me: True, Drew.  But it would be really nice if he did.
Tucker: But what if he DID?
Drew: Maybe it would be a Connor-bot - like him on the outside but a robot inside.
Lee: silent - hiding in another room
Me: Tucker, he can't.
Lee: (finally!!) Tucker, they're right.  His magic doesn't work like that.
Tucker: BUT WHAT IF IT DID!!??

Gotta say something for that kid - he wants to believe in the very best outcome.  I hope I can help him retain that positivity.

6. Friday - six months.

7. A conversation via messages with a friend after my last posting, in which we talked about my shitty luck this year, and how it's ugly and painful, and I realized in writing back to her that despite all the badness of this year (now dubbed Two Thousand Suckteen or Chudley, take your pick) and the sadness that I have and I know I will have forever, I'm still happy.  I am.  I don't think there is anything wrong with having sad and happy co-exist.  Sometimes one takes over for a  little bit, but much like everything else in the world, these opposing notions have to co-exist for my reality to continue.  Before Connor was born, I had both happiness and sadness.  When he was born, I had both.  When he was diagnosed, I had both (except for a few days, when I really didn't).  When I had to have surgery in 2005 - both.  When the other boys were born, when we renovated our house, when I changed careers, when Lee got his MBA, when everything in each day happened, I had happiness and sadness moving on a sliding scale inside me.  That's the hardest, and easiest, thing I've learned this year.  There's an expectation that I will be grieving, and I will be.  But sometimes, it will come out looking a lot like happiness.

So thanks for everything this week, friends, and please - keep being happy.

P.S.  Still haven't thought of a title.  Crap.