Wednesday, December 31, 2014

2014 took away a lot from me. This is what it gave me.

It's finally here.  The last day of the worst year I ever hope to have.  I am thrilled to be almost done with 2014.  It brought me a lot of pain and sadness and frustration.  But it also brought me a lot of good things, and I'm going to try and focus on those now.

I was given the chance to reconnect in more meaningful ways with a lot of friends.  Friends I hadn't spoken with in 5 or more years.  Friends I had inadvertently hurt and not been able to patch things up with.  Friends who were really more like people I knew in the past but we hadn't been friendly in decades.   My life would be a whole lot different if I hadn't made or remade the connections, and really exercised them.  I went outside a lot of boundaries I had put in place when I became a parent.  I went back to see rock shows.  I jumped up on stage at the Clarendon Grill with Gonzo's Nose for the first time since 2009.  I traveled and saw friends old and dear to me, celebrated birthdays and new homes and new babies.  I tried to leave my baggage at the door when I got there, too, and will keep trying to do that in years to come.  Everyone knows I have the baggage.  I don't have to carry it everywhere.

I was given the chance to give a gift I never really wanted to give to my parents.  They probably knew what I was capable of, but never wanted me to have to prove it to them.  I wouldn't have had February in me if it weren't for them and my siblings.  It didn't occur to me that everyone would just drive to me on the 1st.  But they did.  They came as soon and as safely as they could.  They handled the things I could not handle: phone calls, printing programs, finding long-lost items in the house that belonged to Connor, cooking, cleaning, laundry, etc...  Each of us showed our parents what we are made of, which is them.  I'm proud to have been able to give them a tangible gift of knowing that, but despise the reason behind it.

I was given the chance to succeed despite what felt like insurmountable odds.  It was certainly hard to go back into the office, to keep working and plugging away and making things happen.  My friends and my clients all worked with me to help me meet or exceed my goals for 2014, goals made before any bad thing happened.  I am indebted to them for their faith in me, and their support.

I was given the chance to start over, living a more active and healthful life and showing Drew and Tucker that it's important to take care of yourself.  So much of my energy and time went into caring for Connor that I wasn't able to be better about my own health.  Some of that came home to roost in July with the skin cancer diagnosis.  I may have had cavities at my last dentist appointment, but if I did they honored my request that they just lie to me and tell me my teeth look fine.  Overall, I'm a little healthier, at least physically.

I was given the chance to learn what grateful truly feels like.  We received hundreds of cards and notes.  Probably more than a dozen arrangements.  An amazing outpouring of donations to the two organizations we indicated.  My sister's Team-in-Training fundraising more than doubled her target, and she redirected some of the donations to others on her team so they could meet their goals.  The Arc of Northern Virginia informed us in August that the donations total in Connor's honor exceeded $10,000.  There have been more donations since then.  These are gifts I cannot match, though my heart swells with gladness that such love surrounded my little one.

Lastly, I was given the chance to take what I'm feeling and write it out in words and share it with people in a way I never did before.  This blog still feels like a vanity project, but I'm grateful for all the reads, the comments, and the conversations it's started.

Happy new year to all of you, and thank God 2014 is done.  I won't miss you, worst year.  And by the way, that's not a challenge to any upcoming year to try and beat it.  Really.  I'm well satisfied thinking that this is the worst.

To go back to the song that got me through Connor's diagnosis, and those bleak days in February this year, "It's times like these, you learn to live again.  It's times like these, you give and give again.  It's times like these, you learn to love again.  It's times like there, it's time, it's time again."


Tuesday, December 16, 2014

Just a quick note

It's the season, and the cards have started trickling in to our home.  I don't think we'll be doing a card this year, all, and it's not a reflection of how we feel about you, or that we just don't care.  We're quite busy trying to make it through these next few weeks without being total messes.

Each of the cards makes me so happy.  I see how wonderful your children are, and how they have grown.  I see how you've had good years.  I feel, in my bones, that you are still there with us, especially with the short, handwritten notes letting us know how often you think of us, and that you hope we have a happy holiday to wrap up this incontrovertibly blech year.

I want you to know that we are definitely trying.  Whether or not we succeed?  Well, only time will tell.

Thanks for sending your cards to us.  Keep them coming.

Wednesday, December 03, 2014

Thanks Be...

Thanks be to so many people.

I know I am late with an expression of thanksgiving and gratefulness, but it's not easy putting everything into words sometimes.  It takes a lot of mental chewing.

I'm thankful that I'm partnered up with Lee Wright.  It may be a joke in his family that he's stubborn and is incapable of giving up, but that exact trait is what got us from where we were to where we are and kept us together.

I'm thankful that Drew and Tucker are experiencing new things every day, and taking most of them in stride.  Many times, they even seem to be enjoying them.

I'm thankful that this dreadful year has brought me so much closer to so many, and rekindled older acquaintances into real, blooming friendships again.

I'm thankful to be healthy again after my unexpected skin setback.

I'm thankful that none of you expect me to be my absolute best-everything-is-totally-okay all the time, because more than ever that's just not sustainable.

I'm thankful, truly, that my sweet Connor isn't struggling to live in his tethered world anymore, and instead is free to roam in our hearts and imaginations.  While I miss him terribly, I know he is safe, and whole, and good, and looking out for me.

Friday, November 21, 2014

For Dear Old UVa

My alma mater has been much in the news lately, and it's been very dark, polarizing, angry, ugly stuff.  It hurts me, much as it may be hurting my classmates and schoolmates, my fellow alumna with whom I shared classes, meals, dorms, 90210/Melrose viewing parties, coffee houses, etc...with, to think that our administration was so blinded by reputational concerns as to cover over these horrible crimes and alleged crimes.  That's what rape is.  It's a crime, punishable by law.  In fact, it's a felony (Class 4) in Virginia.

It will be an ugly and long road ahead, and heads are being called for.  I am not calling for heads.  I just needed to make sure you know something.  To all of my UVA friends (to all my friends everywhere, really) - if I had ever known that someone touched you or violated you in a way uninvited, I would NEVER, EVER have put your "reputation" or mine over your human dignity.  The fact that anyone, ANY HUMAN, would debate whether going to the hospital to report a crime and catalog the injuries sustained based on the argument of "it will ruin your reputation here" is abhorrent.  I find that argument disgusting and morally depraved.  I find it to be unworthy.

I love my sons, and when they were each born I teased Lee that I had it easy because I never had to have the sex talk.  Now I see how hard I will have it - raising them to be strong and smart and kind and generous.  I need to find a way to subtly show them, time and again, that every time they hear the word no, the only thing that they can possibly do is to STOP.  Stop throwing Legos at your brother.  Stop eating like a animal.  Stop poking me while we sit and watch TV.  In learning to stop, they will learn to think about why what they are doing is wrong or annoying.  Hopefully, by the time they are men, they will think the whole way through.

They will go to college one day (hopefully) and I need to know that I have sent them out as emissaries of goodness.  Lee and I need to know that we have raised good men.


Friday, November 14, 2014

#1Day1Goal #SavingEliza

I have a lot on my mind, and this is likely going to sound disjointed at the start.

My doctor is on me about exercising, so I have started to walk a couple of miles a day after I drop the boys at school.  I listen to music while I do this, of course, mainly a playlist I made for my 40th birthday party of songs that make me happy.  Earlier this week, "Someday, Someway" by Marshall Crenshaw (who I've already rhapsodized about on this blog...here: http://chunkinsblog.blogspot.com/2013/07/happy-music.html) popped up on the playlist.  (Funny sidenote about this playlist.  I had a party for my 40th birthday.  It was about 4 hours long, basically.  The playlist, on the other hand, runs for 13 hours.)

ANYWAY, this Marshall Crenshaw song is pretty well known, and I bounced along the sidewalk sort of half singing it under my breath while I walked.  The second verse is "After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you."

I need to take the love you brought my way and give it all right back to you.

Another verse is "I can't stand to see you sad, I can't bear to see you cry.  If you can't tell me what you need, all I can do is wonder why."  This brings in the second thread, Tucker.  Tucker is talking a lot about Connor lately, and crying more.  He didn't do much mourning at the very beginning; he wasn't able to express it then.  Now he can, and he is, and sometimes it comes out in very unexpected ways.  There are two very recent examples I've decided to share here today.  The first is when we told the boys we were going to move a TV and the XBOX down to their basement lair.  Instead of being excited, they both said, "No, let's not change the basement.  We don't like change."  I mean, it takes a different kind of kid to turn down private XBOX access.  So we said okay - we aren't going to force that.

The second was this Tuesday, as the boys helped me move a bunch of clothing and household donations from the attic to the car so I could take them to my old office to donate.  It was 2 years worth of donations, so it was over 20 bags.  They worked out an assembly line and worked hard, and even seemed to have fun.  We got almost to the end, and Drew said, "Mom, I can't get Tucker to give me the last bag."  I walked back into the house and found Tucker lying on top of the last bag, his arms and legs wrapped around the sides and tears streaming down his face.  He was devastated that we were giving things away, even though they didn't fit or weren't needed and being moved on to those who could and did need them.  I gently pried him off the bag and let him cry it out on me.  We have forced so many things on him this year, by nature of how life played out.  He doesn't seem so sensitive when you interact with him, so it's always a surprise when he is.  Drew's sensitivities are right there on the surface and you know where you are with him.  Tucker's are deeper inside and it takes what seems like a seismic shift for them to cause an eruption.

This song really played on me a lot this week, more even than "All About That Bass" which is an earworm of nuclear levels.

This morning, it all gelled in my mind together, and here I am.

After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you.

An old friend has a beautiful daughter.  She turns 5 this Sunday.  She has been diagnosed with Sanfilippo Syndrome A, a long-term and ultimately terminal diagnosis.  I'm giving my love back to them right now.  You may have seen news articles or segments on the TODAY Show or other programs.  They've been living in quarantine for more than 5 months in the hopes that they accomplish their goal of fundraising almost $2 million dollars and can fund the clinical trial of a drug that has been developed that can save her.  SAVE HER.  They can take a day that her parents will never forget, the day that the doctors had to sit them down and tell them that she was going to fade away, slowly, incrementally, and eventually from their arms, and turn it around.  I had that day.  I sat between my husband and my mother and cried for an hour straight mourning the life I had imagined for Connor, one of my hands in each of theirs.  I was never able to have a day like the one they are so close to, though.  A day filled with hope, where they see that they have raised enough so the trial can take place, and know that they may have been able to fix her.  My sons have to spend most of their lives mourning their brother, lost so early in their lives.  I cannot stand by and see another family laid low by devastation.  I will not.

This Sunday is her 5th birthday.  They are ending the fundraising with one last push.  It's called #1day1goal.  Their goal is to raise the remainder.  As of last night, they needed 4600 people to donate $100 each to reach it.  Maybe you can donate $100.  Maybe you can only donate $10.  But your $10 helps Eliza get better, helps her parents sleep a little easier at night, help her brother avoid, even unknowingly, the pain of losing a sibling.  It can also help the thousands of other individuals who have been diagnosed and their families, and those not even born yet with this syndrome.

I don't normally ask people to repost my blog ramblings, but I am asking you to do it today.  I couldn't save Connor.  His path was irremediable.  I could only help him along the best I could for as long as he let me.  But I can help Eliza and her family.  Please share this as far and as wide as you possibly can.  Funding ends November 16, 2014.  You can donate at www.savingeliza.com.

After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you.


Tuesday, October 28, 2014

Lie to me!

This morning, I had to go back for my normal 6-month dental checkup.  I walked in, plopped gracelessly into the exam chair, and said, "If I have any cavities, please just lie to me today and tell me that I don't.  I'm kind of done for this year."  The technician laughed, then reviewed my chart and said, "We did two fillings last time!"  She read some more.  "It's been a year since your x-rays, but since you had cancer this year..."

"Yeah, let's skip that, please.  Seriously. LIE to me.  I don't want to know."

My teeth were fine.  Or maybe they weren't.  I'm honestly unsure if she took my request to heart or if my daily ministrations were adequate enough to stave the inevitable decay of my teeth.

I have a cold.  I started getting it on Thursday night. I realized, as I struggled to fall asleep last night, that I haven't had a cold since Connor had his last cold.  I don't think I am entertaining any irrational ideas, like this could kill me too, but maybe I am in the deepest of my subconsciousness.  It's just another reminder in a world crowded with reminders.

Halloween is upon us, and that was always hard - finding a costume that would work for him and not make him uncomfortable; going to the block party where inevitably, there were people who didn't know us and I felt like he was on display; one of us keeping him home so that the other could take the other munchkins trick-or-treating.

The boys and I went to the pumpkin patch with Lee's parents this year, and they selected a white pumpkin for Connor, because "...he's a ghost now..."  Okay, boys.  We carved them yesterday, and then Tucker "got sad" at the reminder.  We put their pumpkins together which made him feel better.  He spoke again yesterday about wanting to be dead so he could be with his brother.  He's also started being very sad to the point of tears every time he has to say good-bye to a pet.  Mind you, these are not our pets - they are family or friend pets, and all that is happening is that they are going home, or we are going home.  But it occurred to me that these dogs are snuggle friends for Tucker, and he frequently snuggled Connor.  I hate seeing him cry each time he and whatever dog he's attached himself to are separated.

On the flip side, Drew doesn't mention anything at all.  He also handles separation from animals with aplomb.  Being 8 seems to suit him.  He runs around in Connor's old winter pajamas, which fit him well, but it's painful to see those again.  The last things he wore were pajamas.  I should have just gotten rid of them all.

Tuesday, October 21, 2014

Why I Love People

Lately I've been feeling like I've become a little inarticulate, and a little like a caricature.  Like I was saying too much of the same thing over and over and it was losing it's efficacy.

Then, today, when news broke about something people would know I would want to know about (yes, the Black Cat Foo Fighters show) I started getting inundated with messages.  Emails.  Texts.  Voicemails.  Calls.  Facebook posts.  Facebook messages.

People sent me something to make sure I didn't miss out.  But the thing is, while I can't go, I am NOT missing out. I am filled with gratitude for all these people who made sure I knew.  You're awesome Francesca, Scott, Rob, Jen, Steve, Kristan.

And so are the rest of you.

But I'll say one thing.  UVA had DAMN WELL better beat UNC at football this weekend.  Seriously.

Update - our line buddy from the National, Gary, just texted me to make sure I knew, too. I love people.

Monday, October 13, 2014

Videos...old and new

So this weekend was FIVE DAYS LONG, but we survived it and are headed into the regular week mostly unscathed.  I planned to watch a movie from our large DVD collection each night that Lee was gone, but I never managed to get to it tonight.  I ended up watching Harry Potter and the Goblet of Fire on some premium channel while I folded what felt like 18 loads of laundry.  Harry Potter is like the Foo Fighters of books for me.  I adore them, they make me feel many things, and I desperately wish that I could share them more with my kids.  But Goblet of Fire is where we've drawn the lines as parents.  The death of Cedric Diggory, a peripheral character whose demise signaled the final step into the dark for the series, is not one I am prepared to face with the boys yet.  I have told them that when they have read the book, they can watch the movie.  Drew is close, but keeps getting sidetracked by all the other books that pass his eye.

I can tell you that the sounds made by Cedric Diggory's father are exactly right near the end of that film.  It's never failed to bring me to tears.

While I was doing this, I recorded a video and posted it to youtube.  It's a fundraising participation for SavingEliza.com, where you sing 2 lines of a sing and donate and challenge others to do so.  The donation goes to a clinical trial for those afflicted with Sanfilippo Syndrome Type A.  The trial needs to be fully funded, so Eliza's family has been fundraising like mad for months.  They've been featured on the Today Show, virally online - they're everywhere.  They're close, too.  Eliza's father and I went to high school together, and it's been hard for me to follow this year what with my own troubles, but you just can't hide in your cave forever.  So I made the video and sang Tucker's favorite song, "Beautiful Boy" by John Lennon.  I sang "Before you cross the street, take my hand.  Life is what happens to you while you're busy making other plans." which is spectacularly true.  I hope you can help out.  Somehow, Connor managed to inspire people to donate over $10,000 to the Arc of Northern Virginia.  I hope I can inspire half that much, though my expectations are not grandiose.

In any case, I just went to see how many views my video had.  (Spoiler alert, as of now, we're standing tall at....NO VIEWS), and there they were.  Old videos of Connor playing with toys, standing up at school, and working in a gait trainer.  His eyes fully focused, even happy at times.  God, I just miss so much of him.  One if my many laments is that I lost my baby with my eyes.  All my children are adorable - but Connor was the most like my physically.  He had the loveliest shade of gray and green mixed together, and naturally, the most luscious eyelashes.  Boys.  Why do they get the lashes?  More to the point, if they don't care so much about lashes (the way that girls do) WHY DO WE BOTHER?  But I digress.

Tomorrow is another appointment with a less-regularly seen physician.  I'll have to tell him about Connor, and about having cancer for a few weeks.  And discuss mammograms.

Tomorrow's going to ROCK.  I think I'll plan ahead and watch "Not Another Teen Movie" tomorrow night.  I'll need the vapidness and the laughs from that old video.  Company is welcome.

https://www.youtube.com/channel/UCxLJ5OBBwp3872GP_uqHX8Q

www.savingeliza.com

Wednesday, October 01, 2014

8 Months

Today, the calendar tells me it's been 8 months.  It's such a strange feeling: sometimes it feels as though it just happened, and the shock washes back over me like that one rogue wave the comes up high on the sand where you built the castle, thinking it would last much longer that was, but gets wiped out by chance.  Sometimes, it's feels as though it has been forever since I snuggled him, or fed him some food that he enjoyed (black beans were a major favorite).  Like he's been gone for years.  How did that big void get filled with other "things" so quickly?

Earlier this week, I was working on a letter game with Tucker, where he has to identify the letter on the card, tell us the sound it makes, and then a word that starts with it.  He had the letter, "a", which he correctly identified and produced the sounds for.  But he was stumped on the word.  I gave him a clue, "The people in heaven are..." and he promptly and confidently said, "Brothers."

The interior me was gulping for air.

The exterior me said, "Well, of course, but I was thinking more of their special wings and halos."  Eventually, I had to give him the word, angels.

This week is Drew's birthday.  He'll be 8.  In one more year and 2 days, he'll be 9.  In two more years and two days, he'll have lived longer than his older brother.  When he was born, we survived the first 6 weeks of his life watching him like a hawk, desperate to notice anything that seemed to echo Connor's behavior that was most likely a descent into his condition.  It was harrowing and exhausting, and ultimately unnecessary.  Now I worry - will he be thinking about his age as he gets closer to the age where his older brother died?  I will be, but I'm Mom, I'm inclined to overthink things.  I feel sorry for Drew as he's an oldest by accident, and has to be our guinea pig for so many events and occurrences.  We didn't worry as extensively about Tucker as a newborn.  Will I worry as much in 4.5 years when he is about to turn 10?  What memories of Connor will Tucker have by then?  We talk a lot about him to help Tucker remember, and Drew too (though Drew's memory is sharp and long, and I don't think it will be as difficult for him).

Aw, crap.  As Pastor John said at the service, sometimes, it just sucks.  This?  It sucks.  Every single day.


Thursday, September 18, 2014

I'll Stick Around (warning - this puppy is LONG)

If you are reading this blog, then you most likely already know me enough from my facebook page to understand that I am deeply, deeply invested/obsessed with Foo Fighters and Dave Grohl.  I decided many years ago to just accept it and move on.  For many years, it was this little (or maybe not so little) secret inside me.  People knew I liked the music, it's not as though I am shy about that.  I don't think most of them got the Mariana Trench-like depth that it is, though.  At the time that the first album came out, I was working at a music store, and could not have been more curious and enthusiastic for the record.  When Kurt Cobain ended his life, and Nirvana, my second thought was "What are the other guys going to do now?"  I had my answer, and it was good.  Really, really good.   Back then, when I was 22, I read the music magazines, the reviews, everything I could get my hands on. I love all music, but there are some artists, some bands, and sometimes just songs, that slip under my carefully constructed Armor of Cool and disarm me, leaving my heart and soul exposed and increasing my heart rate, my endorphins, and my happiness.  Learning how he built the entire first album himself, recording on all the instruments and the vocals?  It thrilled my little rock&roll heart.

So back in the spring of 2014 (not that we had one this year...) the 9:30 Club announced a show that you had to go buy actual tickets for at the box office.  Dave Grohl was going to be "hosting" the show.  Whispers were that the Foo Fighters would be playing a set.  I was still tentative about everything.  It was too soon for me to be committing to something as I didn't know from minute to minute how I would be feeling.  I didn't bother to go get tickets, despite the encouragement from my friends.  And then, when it became apparent they were playing, I learned that there was no transferring tickets.  I was so angry, mostly with myself.  I had allowed this chance to see them in a small venue vanish.

Then, in the summer, a person in Richmond basically sponsored a show by selling tickets to a non-existent show via crowdsourcing.  They decided to ask the Foo Fighters to come play for the first time since 1998 if they raised enough money. Could I have thrown some bucks in and secured my tickets back when I first heard about this?  Of course I could. Did I? Of course I did not.  I had skated by again, knowing I had the chance, and being too self-centered and navel-contemplative to even just CLICK A FEW KEYS ON MY COMPUTER.  Then it went quiet, and life continued chugged along.  The HBO show Sonic Highways was announced.  I got more excited.  I preordered the new album.  More excited.  Then, on September 2, the same day that my youngest started kindergarten, they announced that the crowdsourced show was scheduled for September 17 at the National in Richmond and everyone who had donated to the fund should check their email for updates.

Wow, did I feel like a lazy jerk.  Now I couldn't get in, because no other tickets would be sold.

I posted about needing to go to this concert on facebook, needing something positive to end my 40th year with something good after how spectacularly awful this year has been.  It was a shot in the dark.  But it pierced something because it started getting shared around.  Slim fingers of hope started to wrap themselves around my hands and heart, squeezing gently as if to say, "It's gonna happen...keep believing."

Lee was out with a friend.  He knew that I wanted tickets and planned to spend the evening trolling the internet trying to find them.  He did not expect, when he came home, for me to say, "I have a solid line on tickets...from someone I went to grade school with."  Frankly, neither did I.  I mean, GRADE SCHOOL.  And someone not only from that school, but to whom I don't think I had any contact of any kind from 1987 until, well, about 2 weeks ago.  I mean, sometime in the last year we had reconnected on facebook, but in the barest of ways.  To hear the "ding!" of my iPad, and open up Messenger and see this?  It was shocking, and amazing.


So, first of all, I got to reconnect with someone who knew me at possibly my most obstreperous and we got to be adults about it.  I mean, who isn't to some degree a pain in the ass at the age of 13?  Now, with all this water under the bridge, it's been really nice to chat back and forth.  In any case, seeing the name James Murphy pop up with this?  It was so far out of left field, you couldn't even see the stadium if you looked back.

But then he dropped the real bomb.  It wasn't tickets.  It was the band's guest list.

I am going to be on the Guest List for a Foo Fighters show in a club set up for about 1000 people, not an arena or a stadium.   HOLY SHITBALLS (Sorry, Mom.  Sometimes, that's the only word that works for the Spaghetti Monster of emotions in my stomach.)

And here's that proof:


We confirmed our plans - childcare coverage (thank you, AGAIN, Mom!) - hotel room by the venue (yay, Marriott Rewards points!).  Took off after lunch yesterday, with an easy ride to Richmond.  We checked into the hotel, and walked the two blocks to the venue.  Got in the very short line for will call (all tickets were will call).  I went to the glass, said, "Hi, how are you?" to the nice man inside.  He answered, and then I said, "My name is Colleen Wright.  I'm on the band's guest list."

Let me just take a moment to let that sink in.

Okay, so he told me that the band wasn't quite done their guest list and to come back in 30 minutes.  We said okay, and walked off.  About 15 seconds later, I exclaimed, "Oh my God, that was the weirdest thing ever."  Lee asked why, and I said that I used to be the one making the guest list, not saying that I'm on it.  And I noticed something while I was talking.  My normal tone of voice had shifted.  I was speaking about 2 octaves higher than normal - a sure sign that my excitement had elevated to a dangerously unsustainable level.  We laughed about it, then went and had a drink at the hotel bar.  Went back.  Same story.  Went back to hotel, chilled.  Went back.  Same story.  Went to get ready for dinner, went back, no dice.  But we were assured that people on the band's guest list would be able to come get their wristbands at any time, whereas the crowdsourcing fund people had only until 5:30.  So we went to dinner, and were joined by my cousin and her son and my sister-in-law.  It was so much fun.  I'm going to post a link to the photos from the whole day below so you can see all this, btw.  Dinner was DELICIOUS, thanks Tarrant's Cafe!

Anyway, back to the venue...AGAIN.  This time, for real.  Got the wristbands.  Got in line, which extended all down Broad Street and then back 8th Street.  We were almost at the intersection of 8th and Marshall.  After about 30 minutes, the doors opened and the line filed in.  We grabbed beers and headed as close to the front as possible.  I took some pictures (or Lee did) and texted them to James, as he wanted proof that we made it in.  Posted them to facebook also, telling everyone I would see them after the show.  Phones off.  I was there to see and hear Foo Fighters, not to watch them through a tiny screen.  I can't dance and throw my hands up in the air while desperately gripping an iPhone I'd just gotten repaired.

The openers, a Richmond band called Avers, were good.  6 people, including a female bass player (YAY!).  Ultimately, they were like a combination of Mazzy Star and Smashing Pumpkins, though, and I can't remember a single thing about their music except that they all played well.  Just not my cuppa.  Too swirly-sounding, and muddled vocals.  They wouldn't pierce my Armor of Cool.

Then, after about a 30 minute set break, Foo Fighters came out.  The room exploded.  I have the setlist - it's in the photos further on.  I danced.  Threw my hands out.  Elbowed the girl in the head in front of me about 20 times.  Sang along.  So did everyone else.  It was amazing.  IT WAS HOT.  I made it 10 songs, and then I was so overheated, and underhydrated, that I had to leave the floor and head back up.  We went to the bar for water.  I must have looked bad, as two police officers and one staff member kept forcing water and orange juice at me.  One asked, "Do you need an ambulance?"  I practically leapt to my feet.  NO!  I'm fine.  Just dehydrated.

What a rookie.  I can't believe that happened.

When the encore came about, Dave came out talking, and randomly strumming his guitar.  I don't know what all he said, but I leaned into Lee and said, "That's the right sound." and he replied, "I know."  Then Dave said, clearly, "This is Times Like These," and started to play.  I just grabbed Lee's arm, gripped it tight, and stood there crying.  He played up to the bridge solo, and then the band came in and they rocked up the rest of it, at which point I started dancing again.  Wiped my tears, thanked Connor for coming with us for a few minutes, and then enjoyed the rest of the show.

On the way back to the hotel, we talked about the trip out of the crowd when I knew I was done there.  I told Lee they had offered me an ambulance.  He laughed and said, "I would have let them take you just to see how you reacted."  I leveled a stare at him and said, "That would have been the last thing you ever did."

Anyway, this one amazing night, courtesy of James from grade school.  The mysteries of this world are so huge, and so small, at the same time sometimes.  What are the chances that he and I came to know each other in the 80s, and then he went about his life and I mine for 25+ years separately.  Then a random facebook "people you know" notice sent us back into each other's spheres, but still we didn't really talk there.  Not until this.  And typing "thank you" over and over isn't enough.  I told him that we needed his address to send him a proper thank you and this was his response:


This, from the guy who took a different approach to yearbook signing in 8th grade.  Everyone else wrote things like, "Wow, what a great year!  Good luck in high school..." etc.  He wrote, "Well, this year was pretty dumb.  Stay bossy and ERA - it kind of suits you.  See you at Ursuline I guess."

I never saw him at Ursuline.  I never saw him in high school, or college, or post-college.  But he saw me pretty well there in 8th grade, based on the above.  I'm indebted to him, and to his friend who made the connection for me.

I truly love seeing how far out the concentric ripples of life are carrying me.  I'm ready to be done with 40 on this note.  Bring on 41. With friends like you all, I know I can make it through whatever they throw at me.



Photos are here: https://plus.google.com/photos/116075449724602290840/albums/6060453284877870513?authkey=CPGdju-7z_K7DA








Saturday, September 13, 2014

Been a long time...

Back in my pre-married days, I had allergies.  I still have them, but I ignored them for a long time.  My allergist is awesome.  I went to see him because I was having trouble with my throat.  He helped me.  More than at least getting my throat to be somewhat useful, he also was my favorite doctor.  I could get extremely grumpy before an appointment with him, but I knew that I would be in a better mood after I saw him.  It just worked.

I stopped going and ceased the shots when Connor was diagnosed.  I went in to see him, and told him that this was it, because Connor had so many appointments that I would always be cancelling the shots, and I had learned the hard way that not maintaining a strict schedule for your allergy shots led to bad reactions (am I right, Chris??).  He said to me, "It's okay that you are breaking up with me."  I laughed, and said, "If I ever need to come back, I'm coming back."

I needed to go back.  I called and made the appointment this week, and went to see him this morning.  As I went through the triage with his nurse, he suddenly walked in and said, "You won't believe this..."

It had been 10 years - I wasn't even sure he would remember me.

He went on to say, "Just yesterday I had a patient in the room next door whose child has an undiagnosed neurological problem, and I was telling him about a patient who had a child with neurological issues who was in a band, and did all this cool stuff - gone on tour with the USO and all...and then I looked at my patient list for today and there you were."

He remembered me.  He then said, "Okay, I gotta go finish that other appointment.  It was just too weird not to come tell you this. Back in a few minutes..." and walked out.

HE LEFT ANOTHER PATIENT TO COME TELL ME THIS.

Man, I love this doctor.  I'm so glad I insisted on seeing him and  not one of his partners.

Anyway, he came back, and one of his first questions was beautifully phrased after he heard me say, "He had a diagnosis, which morphed into another one."  He said, "Has your son passed?"  It doesn't sound beautifully phrased, but when I have had to say what happened, a hundred times this year already when someone asks after him and they don't know, it is a welcome relief to just be able to say, "Yes." and not explain further.  It gives me a chance to swallow the lump back into my throat and compose myself.  Long sentences don't allow that.

Anyway, I have to go get allergy tested again.  NUTS.  But he gave me prescriptions, too, which led me back to CVS.  I walked up to the counter and there was my pharmacist, and I handed over the scrips.  She typed a bunch, asked for my card, etc.  When we were done, she said, "It's good to see you again," and smiled.  I smiled back, finally brave enough to speak to her again, and said, "It's good to see you, too."

I had to buy something on my way out, and the clerk said, "Girl!  We haven't seen you in so long!  Where have you been?"  I swallowed again, and then said, "I don't have as many prescriptions to fill now."  True answer, easier to say.  She said, "You don't need prescriptions to fill to come in and say hi."

It's rainy, it's cooling down, and I am spinning towards the end of my 40th year.  But today was still pretty good.

Thursday, September 11, 2014

9/11

So everywhere today, you are seeing and hearing "Never Forget."  I don't forget, and I can't forget.  But this year, for the first time, this day isn't nearly as bad for me as it has been.

September 11 was the first truly impactful event of my adult life.  I was still a child then Challenger exploded, and my reaction to it was childish and appropriate (maybe?  I honestly remember only that my initial though was that the teacher who told us was kidding, and then being sad.  Otherwise - blank slate).  It doesn't sit in me, peeking around the corner every once in a while to remind me about sadness and how little control we have in our world.

But 9/11 - it changed us all, in enormous and minute ways.  It settled on us, reminding us daily of how small we are in the world, and how precious our lives are.  It replaced sunny optimism with fear and anxiety.  It tore families apart as our country ended up engaging in wars halfway around the world with mixed results at best.  It deepened the divide between political leanings and created a chasm that few can comfortably stand astride, wanting to have a middle ground.

It used to be that when I looked back, I thought about how it almost ruined our carefully planned wedding.  How self-centered of me.  Now, I look back and think about how much more poignant it made the wedding, because we all so deeply needed something positive to happen, and it was so meaningful to me that many of our guests traveled in a more complicated way and world to come celebrate with us.  Seeing each of them, hugging them, telling them how glad we were to see them, that they had come - it was truly meant.  Everyone knew it, and probably felt it.

It was a pretty good party.  And it showed me that you cannot stop the good in the world either.




Wednesday, September 03, 2014

Transportation

Since Drew started elementary school a few years ago, he has almost always been driven to school because Tucker needed to be dropped off at his school right after (and much further away than I - or he - could walk).  This is changing this year, and no one is happy about it.  Well, I am happy about it, but neither of the boys are.

So yesterday, I posted that the bus drove by on 26th Street as we left, and how bittersweet that was for me.  The first year in 9 that we haven't had Connor out at the end of the driveway, ready for the first day of school, was not easy.  But we had the excitement of Tucker starting kindergarten to help divert our attention.

So we walk, and they complain, but I know it will get better.  It was made easier on the way home through 90+ degree weather by Mrs. Smythers, who distributed popsicles to people (and dyed my kids hands blue - but that's better than wilting children halfway home)!

This morning, the boys lobbied hard for me to drive them to school.  No can do, boyos.  Get your sneakers on and your backpacks ready!  Want to walk up Potomac Street?  YES!  (Sometimes, incentives are that simple and satisfying).  What we weren't expecting was to encounter our neighbors outside waiting for the bus, and us watching it roll right by the street.  It's their first year in the system, and their sweet, happy son is headed to school for the first time.  I immediately whipped out my phone and dialed the Transportation Department and gave him the phone, as well as the Route number I'd seen yesterday.  It took about 10 minutes of talking/holding to get answers, none of which were satisfactory to me, and I was only listening to one half of the conversation.  Turns out the bus that went by yesterday shouldn't have gone by at all - it should have gone up a block earlier and picked up a new student.  But it didn't.

The boys played with the new student, and once the phone call was done we kept going, though I had to carry/speedwalk with Tucker to school, I managed to get them there on time, but only barely.

Now I'm gathering contacts for our neighbors of advocates so they can ensure that the bus makes it to their home each day as it should.

I can't escape the bus.  It feels good though to have this experience I can share with parents who are new to this element of the system.  I guess it's one way I can channel the feelings, and give back in a direct fashion.  

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 https://www.youtube.com/watch?v=H5TQ4GF8rNI).  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.


Tuesday, July 29, 2014

2014: The Hits Just Keep On Coming!

Yes, that is sarcastic.  2014 was already on record as the worst year for me.  I know it is not for everyone, and I am so glad about that.  But really, I could have done without all this.

So, my GP has been after me to go get a baseline skin assessment done for about 3 years.  I am quite fair, so it makes sense that he wanted me to do this but I kept putting it off.  But then I noticed a few things - a few minor changes - that made me go ahead and schedule.  Last week, I went and had a very nice doctor look over every inch of me.  FUN!  She took one of the "changes" off using lidocaine and a razor, and told me I would have results within a week, maybe sooner.

My results?  They ended with "-oma"...yep.  In the year that already sucked beyond all expectations, now I also have skin cancer; squamous cell carcinoma, to be precise.  I will be fine, and I already have another procedure scheduled next week to have the area around the biopsy removed so as to make my skin cancer-free.  I'll have to be even more hyper vigilant than I have been about my skin care, and I'll have to get checked more often.  I'm okay with all of this.  SCC is common, and they know how to deal with it.  And if my body was going to do this, at least it is in the outer layers of the cells that make up me.  I have too many friends and family who have had much worse diagnoses, where the insides of them betrayed them.  Mine is just a teeny spot on my skin.  We're attacking this with our usual vigor, and I'm looking forward to it being in my rearview mirror.

But how much does 2014 suck?  It's 1000%.  This year sucks beyond mathematical possibility.  It may as well be Imaginary Number%.  I HATE THIS YEAR.  I hate it.  I'm so over it.  How ridiculous are things when being told that I have cancer is NOT the worst thing that has happened to me this year?

I cannot hibernate for 5 months waiting for next year, but I want to.

At the end of the day, I'm grateful to my doctor for pressuring me to do this, I'm grateful to my husband and family for not freaking out when I told them, and I'm grateful that I can have this taken care of with a minimum of disruption to life.  Whether or not I've been through "enough" this year, my kids certainly have, and I can't be the mom who had to tell them about their brother, and then almost 6 months later tell them that I have cancer.  They have been through enough, so for now they know that Mom had her skin checked because it's important to take care of yourself, and that I have to have a little more skin removed, and that they have to wear sunscreen every day.

So please, get your skin checked and wear your sunscreen every day.  


Thursday, July 24, 2014

Times Like These

In the last few weeks I've had several band practices.  Playing music is without a doubt an important part of my healing process.  We are playing a fundraiser for the Arc of Northern Virginia.  The Arc is a national organization with state and local chapters which offers support and assistance to families and individuals with special needs.  When we needed help navigating the very murky waters of the EDCD waiver process, they pitched in and helped us cross the morass of conflicting paperwork requests.  When Connor passed, we requested that people make donations in his name to them, and you all did - so, so much.  I'm still not done the thank you notes, but I am working on them.

Anyway - band practice - so we were running through some older songs.  I started thinking about music (that happens a LOT with me) and then about Foo Fighters (also...happens a LOT) and then suddenly a thought crossed my mind that many, many people who read this were at Connor's service, and many, many people who read this don't know why I picked the music I did for his service.  So I thought, I should share why I picked those songs.  So here goes...

We had a lot of latitude with the music, and Lee left it mainly to me because he knew it was important to me.  I picked readings from Scripture with the assistance of our pastor, and one of the ones I selected was Matthew 5:14-15 - you are the light of the world.  It was a reading at our wedding, one I have always loved.  Connor was a light for the world, even with his limitations.  So I also selected "You Are the Light of the World" from Godspell as the recessional song.   You are the light of the world, but the smallest candlestick ain't much good without a wick!  It's funky and jazzy, and I wanted something very upbeat for everyone as they left the sanctuary.  While this was a sad event, it wasn't our inclination or nature to want it to be dirge-y all the time.  We wanted the service to be bright, celebratory.  We knew the inherent sadness of what had happened but we also knew that celebrating him was the only right way to do this.

Several weeks later, on the way home from piano, Drew told me that he thought it was inappropriate.  Yeah?  TOO BAD, as Bad Cop from the Lego Movie would say.

I wanted something for Ms. Megan, Connor's therapist, who couldn't be with us.  I landed on "On Eagles' Wings" which is a well-known hymn, and the song she asked me to sing at her wedding.  The congregation sang that together.  It talks about being scared and being protected and lifted up - all things I think we were feeling.  It helped me to have a little bit of something for her there.  We miss her, and hated telling her on the telephone more than almost anyone else.

Then, the real outlier, and the song that was not even remotely traditional.  It's not really a mystery that I have a serious, serious obsession with Foo Fighters, right?  In 2004, Connor was born and soon after diagnosed, and Lee and I sort of withered away for a while trying to learn how to live this new life we had.  With all the appointments with specialists and doctors, and early intervention meetings, I spent quite a bit of time in the car.  My mainstay radio station in the car was DC101, and for some reason during that summer they had "Times Like These" from One By One in heavy rotation.  It wasn't a new song, but I guess they just liked it a lot or divine intervention was happening.  Either way, I found it to be exceptionally helpful.  It's times like these you learn to live again.  It's times like these you give and give again.  It's times like these you learn to love again.  It's times like these - it's time and time again.  Yep.  That's pretty much what I needed in a nutshell.

The morning after Connor died, I laid in bed and listened to it over and over, but the album version was a full-on rock song.  It just didn't feel right.  I pulled up a web browser and found the video for the acoustic version.  There it was.  Just what I wanted.  So I went to iTunes, and guess what?  Not available in the US for purchase.  But I didn't give up.  I called my friends Courtney and Dave, both tied into the music community, and said, "I need this song.  Can you help me get it?"  And they did.  Eventually (and a little ironically) Courtney got it from...one of the DJs at DC101.

Anyway, that's the story of the music, and the meanings behind them, for Connor's service.


Friday, July 18, 2014

Old Friends...

Sat on their park bench like bookends...



(sorry it's blurry - 7 year old "photographer")

Back in high school, I finally stopped unilaterally despising the music my parents listened to and finally gave it my own listen.  I had been so consumed with finding my own path that I was closed off to things I eventually embraced.  One of them was Simon & Garfunkel.  And Paul Simon gave me the alternate title for this posting - Still Crazy After All These Years.

On the left - Kristen.  My dearest, closest girlfriend from high school.  Outside of my family, knows more about me than anyone on earth.  You know when you first meet someone, and your brain clicks in and says to you, "Yeah, hold on to that one.  They are gonna be good for you."?  That's what happened to me when we met freshman year of high school.  It was rocky at times, and we've argued, because everyone does, but it's all in the past.  She accepts me with all the extraordinary faults, and has celebrated my weirdness since day 1.  When I picked a college, I chose University of Virginia.  Basically, I picked a school that was going to essentially surround me with people like her all the time.

On the right - Sean.  When I was 15, I was in Godspell at his high school, and he was in the pit band, which was essentially only 5 people.  First band cue practice we all met - cast and band.  It's possible that within that day we became friends, but it was certainly cemented within the run of the show.  One of my favorite memories of high school is before school each day senior year (I had an exchange class at his school) I would arrive, head to the library, and sit at the same table every morning with other students waiting for the first bell.  He was always there with me; or maybe I was always there with him.  Who knows?  But we were simpatico, and always have been.

We all went to Governor's School together - one for academics, one for vocals, one for music.  We've orbited around each other for decades now.  I moved away, then Sean got married, then Kristen did, then I did.  I had them both in my wedding.  Then Sean and his wife moved away - way away, and it was much harder to be in touch.  But when it mattered, we did.

Back in February, I called Kristen on a Saturday morning.  I know she answered in a second because we don't talk to each other on Saturdays.  We talk in stolen 3 minute increments on weekday mornings.  Like moms do.  Sean I hadn't spoken to on the phone since, I don't know - 2005?  We'd communicated mainly via email and facebook.  I really hated that he found out what happened on facebook, but I had run out of ways to call people that day.  Kristen called or texted every day and was with us at the service.  Sent me hilarious cards to remind me to laugh every once in a while.

Sean sent me a message on facebook at 11:00 the night Connor died.  I was on my iPad, unable to sleep.  We ended up chatting online for 2 hours.  I told him early on the conversation that I was really having a hard time dealing with the idea that this day was going to end.  It was so hard to think of the day he left us leaving, and he got it, and he kept me talking to him through the change.  I finally made myself shut off at 1:00 am, but still couldn't sleep.  After 45 minutes, I gave up, booted up my laptop, and wrote the first posting on this blog about what happened.  That posting got far more attention than anything I have written.  As of today, it has over 3000 viewings.

So when Sean told me he was going to be in Pennsylvania in July, it was something bigger intervening.  Kristen and I had already made plans for a mid-July day at Sesame place with some of our children and the Imagination Movers.  Without considering anything at all, I said, you should join us.  He did.

Sitting on that park bench, even slightly out of focus, you can still see the young us and the current us together there.  I am bracketed by people I have been lucky enough to be loved by for 25 years each.  I really, really hope they know how much I love each of them too.

Wednesday, July 09, 2014

Preparation

I'm a reader, and always have been.  When I was much younger, I would leave the bedroom door open, so that after "bedtime" and lights out, I could read by the light of the hallway lamp that my parents left on for my brother and me.  Of course, in terms of the health of my eyes, this was not the best choice.  Alas.  Too late to change it now.

In any case, once, when visiting my cousins in Greenport, NY, I was introduced to a book called "Wren" by Marie Killilea.  I was still quite young, under 10, I suppose, given when they moved away from Greenport.  This book was non-fiction, and the story of Mrs. Killiea's daughter, Karen, born prematurely, which resulted in her developing cerebral palsy.  At the time Karen was born, the doctors recommended that she be sent to an institution and forgotten there as she would never be able to learn, communicate, or care for herself.  Karen's parents said forget that, took her home to her family, and she grew up and thrived and learned and communicates and cares for herself.  Yes, I know that I changed the tense there, but that's because Karen is still alive today (http://en.wikipedia.org/wiki/Karen_Killilea).  This was the first time I read something about special needs.  I was enthralled - look at what this family is!  Look at what this little indomitable (I'm not sure I knew that word then) did!  I know I was impressed with them, with her.  I'm not even sure if my parents ever knew this.  I bet they did.  They always knew way more than I thought they did about my life.

And I re-read it, probably 20 times.  I was a big re-reader as a child, and to a certain degree I still am.

At age 30, I picked up the new book by an author I favor, Lorna Landvik, and started to plow through it.  It's called "Welcome to the Great Mysterious" and about sisters (one of whom has a son with Down syndrome).  A subplot in this book is about the son/nephew and his best friend, who has CP, and who dies during the pages of the novel.  I was pregnant with Connor when I read this, and Lee came in and found me in tears reading this book.  What's wrong!?  Oh, this stupid book...

This one I have not yet re-read, but it's still in my small actual-book library.

Both these books must have been somehow placed in my range to help me prepare, not that I could ever have properly prepared myself.

It's been 5 months.  Well, a little over that.  Lately, we've all been having our own funks, and I imagine that it's related in some way to Connor.  Drew decided after months of growing his hair into an epic nest of insanity each morning to have us give him a buzz cut.  "I want a haircut like Connor's," he said simply to Lee.  So Lee did it, and Drew was TRAUMATIZED.  Seriously.  He hated it.  We talked him through the lack of tangles (which had been an ongoing problem), the quick dry situation he was now in, the fact that putting his swim cap on now will not hurt.  And of course, the old stand-by - it's hair - it will grow back.  He's come around to it.

Yesterday morning, I sat on the sofa with Tucker snuggled in to me, and Drew snuggled in to him, and I rubbed the top of Drew's head.  After about a minute, the message finally made it's way from my fingertips and palms to my brain - this feels as it did when I would rub Connor's head - and I clenched my jaw and fought the tears welling in my eyes.  I tried to tell Lee later, and he said, before I could even finish my thought, "It's feels like Connor."

There are so many things we are just not prepared for.  I am blessed that the people I know will allow me to contemplate my bellybutton while I work through this at times terrifying grieving process.  You don't know when you wake up in the morning if you will be having a good day or a bad one.  But you have to get up.  I have to get up.


Friday, June 13, 2014

Our last Miss Christy Day

It's hard to find the right words sometimes.  Today is the last day we have our nanny, Miss Christy.  She who swept into our lives almost 8 years ago, still a little fresh with her own grief from losing her daughter who had many issues that were comparable to Connor's.  How she swept though!  It was hard, going to work and leaving Connor here with her - a virtual stranger!  But we did, because we are grown-ups and we have to relearn how to let go every once in a while.  As Lee mentioned in his eulogy, the first day she worked for us, Connor threw up on her.  The second day...he threw up on her.  Connor did what little he could to push her away, and she kept coming back.  She adopted him as her own, and cared for him tenderly.  Then Drew was born, and she reveled in having an infant to care for as well.  Drew went from tiny, mewling newborn to the big, strapping 7.75 year old he is under her protective wing, and he is a gentle, smart boy.  She is the person who sat with him and reviewed the alphabet when we were at work.  She is the person who helped him learn his numbers, in both English and Spanish.  She helped him learn to eat with utensils, to walk, to jump, to run.  She took him to school and home.  She met another nanny and brought that nanny's children into our circle, and we made lifelong friends that way.

And then we went and had Tucker.  And she did it ALL OVER AGAIN.  While doing everything at the same level for Connor and Drew.

We had to call her and break her heart in February.  She'd left the evening before, her usual Friday departure, saying "Have a good weekend!  See you Monday!"  Connor had been fed and cared for - by her.  The next morning, we shattered that little peaceful weekend, and within an hour, she was at the house to share her grief with the rest of us who were grieving here.  At the service, she tried to sit in the back and be unobtrusive with her husband.  My sister, under direction to find her, swooped in and brought her to the front pews.  She's family to us, and she sits with us, always.

She's simply amazing.  But the boys have outgrown her, and a new family needs her.  We couldn't recommend her more highly, and we are all on edge today, doing everything we can to keep ourselves together because we know that it will be hard at the end of the day to say our final good-bye.  Of course, we'll still get her to sit sometimes (and will be happy that in addition to seeing her, and the boys spending time with her, the kitchen will get cleaned up to a crazy level and she will do the laundry.  She just can't help herself).  Thank you for giving us 8 years of love and devoted service.  We will all miss you more than we can say.

Thursday, June 05, 2014

New Growth

Today, a tree was planted in my backyard.

It was a gift from friends, and I hope it can make it.  It's a little thing right now, and I hope that getting it in the ground, with lots of fresh air and sunshine, will help it grow.


When Connor died, the women with whom I graduated high school worked together and sent us a seedling too.  And one of them, a horticulturalist, also had one planted in Islamorada, FL, where she lives and works, in his honor.  And our next door neightbors gave us an apple tree kit, which is the kind of tree Drew wants to plant when we inter the ashes.  And my Prison Listers - my college friends from our residential college - planted a tree in Connor's honor at Tuckahoe Park about a quarter mile from the house and next to the school where his beloved Ms. Robin teaches (and taught him).  And then another dear friend from college offered to have a tree planted somewhere nearby in Connor's honor.  I told him we were overrun with trees, but suggested that he plant a tree where he lives in Roanoke to commemorate my sweet boy.

And then...an idea started to germinate.

(See what I did there?)

What if we planted a tree everywhere we went, and helped populate the earth with more green in Connor's honor?  Not to a micro-level (or, if I were being hipstery, going meta on this idea...) so it's not as though I am suggesting that each time I drop my kids at school, or go to 7-11, I'm going to plant trees there.  More along the lines of wherever we take family trips, we work in either the planting of a native tree or arrange for that to take place before or after if necessary.  Something we can do as a family and honor our son and brother together wherever in the world we decide to go.  Because we already feel that we need to go further and see more now that we can, and if we can help the earth in doing so, in his name, well, all the better.

So, if the spirit moves you, go plant a tree for Connor. Try to take a picture of it and send it to me. I'm going to start an album of Connor's trees. Including follow up visits too, years in the future.

Wednesday, May 28, 2014

Looking Back

There are a lot of days where I am focused on looking back at what transpired and thinking exclusively about me.  The movie-like images that are all I can really remember of the day, and how I heard the words from Lee.

Then there are days like yesterday and today, when I look back at the messages I received on email, in facebook, and texts.  I listen to the voicemails that old friends left me.  I tear up, and I laugh sometimes.

I cannot believe how much love is around me all the time.  It is so shocking, and uplifting, and daunting.

This won't be long today.  Just thank you.  And while I'm lacking the capacity to express it properly to you, I love you right back.

Friday, May 23, 2014

Connor(s) to the Rescue!

So last week, I had a business transaction that went sideways quickly and at the very end.  I don't want to go into too much detail as to what happened, but it involved one of Connor's teachers, and it showed me once again how present he is in my life.

When things went south, I started calling around to see if there was a company available to fix things that were needed that same day - like IMMEDIATELY.

First call - we can come tomorrow.  Tomorrow is too late.

Second company - let me check and get back to you but it doesn't look good (they never even called back).
Third company - I think we can, let me place you on hold while I confirm for  you.

It was while I was on hold that I realized that I was on the telephone with Connor's Pest Control, and I knew in that instant that it would all get handled and the deal would finalize.  But I waited/paced incessantly while they confirmed the appointments, and then I went and told Connor's teacher, her husband, and everyone at the table what the new plan was.  Then she and I looked at each other, and I said, "The company that's coming is Connor's Pest Control." and we burst into tears together.

Those poor souls at the table with us.  They had no idea why that made us cry.  As she composed herself, I explained and apologized profusely.  It was so unbelievably unprofessional, and I am embarrassed by it. However, I also recognize that it was meant to happen given how that was going, and so I apologized, explained, and moved on.

Later, I sat in their new home, worked with the engineers and technicians, and prayed hard to Connor, thanking him for helping us out.

And when I got home, I drank ALL THE BEER I wanted to.

The next night, I went to see the new Godzilla movie.  I could have used some Connor in that too.  It was such a boring monster movie!  But I think I had used up all my Connor-karma in the previous day.

Just remember - the ones we love who have gone on are still out there in unexpected, often overlooked ways.  Keep your eyes open.  You never know where you will see them.  In rain when it's hot and dry.  In a good day at school for one of his brothers.  In the Pest Control Company that saves your deal.


Saturday, May 10, 2014

All Good Gifts

So it's been a rough week, and rough weeks happen.  I've thought of Connor more this week than in the previous weeks, and not only because Mother's Day is almost upon us and it's making me nervous and sad.  Lots of things have been happening, both inside me and outside me, and life is complicated, so I've done my best to roll with it.

This morning, I saw a post on facebook that I've seen before.  A news alert that a family with a special needs child had their dinner check taken care of by a nameless stranger at a restaurant with a note delivered that read "God only gives special children to special people."

This is a lovely sentiment.  In my experience, it is also the cause of a LOT of anger and hurt.  And I know that this post may upset my friends who have said something along those lines to me/us, or my friends who are special needs parents, and that's not my intention.  But I've been holding this in for a really long time and I don't want it inside me any longer.

My first point - aren't the teachings of Christ (who, as a person raised in the Roman Catholic faith, is the standard bearer) that everyone is special?  In which case, every family is special, and every person within them is special.  This includes special needs (allergies? manageable blood disorders? sensory concerns?  CHECK CHECK CHECK).

My second point - do you know that when you tell me that God "gave" me this because I am particularly strong enough to handle it, it makes me want to lash out?  How unfair a God to settle this on my shoulders.  I am a good person - a rule follower, a nerd, I studied hard and performed well.  So, my adult life repayment for my hard work and strength is to be "given" a son whose needs are so great that people feel the need to tell me that it shows them how strong I am?  Guess what?  I ALREADY KNEW I WAS STRONG!  I don't need anyone else's affirmation of my strength by laying the blame at the feet of an entity not everyone even believes in! Those who have known me since my very young adulthood can tell you that I was unnaturally strong in high school, a time when being alive is already fraught with overwhelming emotions and irrational behaviors.  My reaction - well, I am who I am and I like me, so who cares what the rest of you think?

The thing is, I really do care what you think.  I want you all to think that I am a good person - the rule-follower, the nerd, the girl who studies hard and performs well.  It colors, and always has, everything that I do.  But on my terms. My success comes from inside me.  And if you don't like me, well, your loss.

Now, to get back to the idea that God gave me an extra-hard situation to showcase my strength to the world.  I don't think that God is like that.  I think He (sorry, Mom) already knows me, and knows that I don't need other people's affirmations.  I think that Connor was ours because that's just the way that things work.  Sometimes, crappy things happen to good people, and here I am talking about what Connor "got".  He was good, as I've always said, and he did nothing to deserve the life he was forced to live.  I will always be grateful that he was mine, and that I was already strong enough to take what he was given and make it a seamless and integrated part of my life, and the lives of my other children, just as Lee was able to.

If you want to acknowledge anything, acknowledge that it's a terrible shame that an innocent child was dealt a difficult fate, and let the parents know that you see them all.  But don't bring God into it.  Saying that God gave this specific situation to you feels like blame to me, and we've never had something or someone to blame.  We just are.  Our strengths rise and fall, just like everyone else.  If anything, I am most grateful that Lee and I fought through all the BS and nonsense of dating to keep trying hard for each other, because without his strength behind me (and hopefully, mine behind his) we never would have gotten as far as we did.  My bad days, strength-wise, were backed by his good ones.

Connor was my gift.  I'd be just as strong if he'd been completely healthy and was still with us.  It would just be showcased in a different way.

Monday, April 21, 2014

Turning 5

Last week, during  Spring Break, Tucker turned five, and what a glorious transition it has been.  He's still struggling with his temper and wanting to make all his own decisions, but it's getting better.

He was pretty exhausted after 5 days of non-stop gogogo with our friends the Croteaus and us.  I kept him home on Friday from the activities so he didn't fall asleep during his own birthday party. So instead of being cultured like his big brother, he did this:


He said, "Mom, I'm going to draw a picture of all of us."  As he drew, he explained that he and Daddy and Drew would be blue.  Because they are boys.  I would be pink, because I am not a boy, and Connor (short falter in his sentence) would be...green.  Granted, it's not the greatest representation, and I'm not sure which one of the boys he drew to look like Cousin Itt from the Addams Family.  But I like it.

When he was done he brought it to me and I told him how good it looked and that I could tell he worked hard on it.  He said, "Yeah.  You have to remember to take it with me when I go to the hospital."

Hm.  Why are you going to the hospital?

"When I die, Mommy.  I need it to come with me so that I can show it to Connor."

Well, knock me over with a feather.  I stopped washing dishes (see, Anne, even I did some dishes!!), dried my hands, and went over to him, explaining that we'd have to keep it safe for a long time because he wasn't supposed to die until he'd lived a good, long, exciting life.  He seemed fine with that.  I took a picture of the drawing in case it got lost/erased/etc, but I also knew that he was really growing up.

I hate that my children have to grow up doing this.  I hate that I have to, but I really, especially hate that they do.  As they grow up, they'll be asked about their family, and I hope they never stop answering about both of their brothers.  One day, the person asking will be special, and I hope they know that being a brother to Connor, for 4 years or 7, made each of my boys really, honestly special people too.

Friday, April 18, 2014

Break

This isn't our first Spring Break, but it's the first one where we've tried to really do something. My dear friend Anne, who dropped everything and rode the train down to be with us that terrible week, has returned with her family in tow. I've known Anne since 1995 - she was my one shining light in a long summer away from all I knew in a beautiful but alien land. To think - it was really just luck. I mean, if she hadn't been out on her porch, and me walking in, how long would it have taken for us to actually meet?  Too long to establish the bond, really.

Anne's first child was born within 24 hours of Connor. Her brave, smart daughter, who said to Anne, "Mom, I want to come with you to the funeral. I feel connected to him because we share such close birthdays."  She and Connor met a handful of times, and all well before her memories started to gel.  What an amazing person she is.

Anyway, Anne and her husband and children are all here, and we are running around, seeing sights, visiting museums, having fun. The boys love having new friends. Honestly, I don't know if Drew will recover from their departure.  I mean,who will play Minecraft with him? (Hopefully no one). And Tucker - finally 5, finally a big boy included in the games.

It's nice to have this break, and to share this place we love with friends who live 7 hours away.

We planned this break together last September. Connor's gift to us all is that we are getting to go places and do things that we couldn't have done with him.  Every day, I have to remind myself that taking advantage of the freedom we have now doesn't dishonor his memory. To the Air and Space Museum, the  Zoo, Mount Vernon. Stuff I wish my boys already felt were rote, boring ideas.

A lot of fun was had this week, and for me, a little more healing. I'll post soon about Tucker's artwork he created today. It deserves it's own place.


Tuesday, April 01, 2014

The long road back to "normal"

For the last 9 and 11/12 years, we have craved "normalcy" in our lives.  We are few weeks away from the anniversary of Connor's diagnosis.  Having an infant created a shift in our normal, but his diagnosis was a seismic shift into many unknowns - neurology, health insurance, therapies, early interventions, specialists - the list could go on for quite a while. Let's leave it at this - it was the best workout my liberal arts mind had since college.  A BA in History doesn't necessarily prepare you for medical terminology and advanced neuroscience.

In any case, we find ourselves craving some stability in this current state of normal.  As I wrote earlier this week, this extra time has thrown us off, and feels abnormal.  Recently, the boys had their first sleepover at their friends' home, and they did great.  SUPER great.  I couldn't be prouder of them.  I couldn't be more grateful to our friends who invited them over, but also treated them to ice cream (and frozen yogurt, as Tucker insisted he go to Tutti Frutti) and then one of them spent the night in their guest room on the same level as my boys in case they woke up in the night scared and in need of some grown-up reassurance.

It was just such a normal thing to do.

While they were busy being normal boys, Lee and I got dressed up and went to the 80s-themed auction for Tucker's preschool.  For the last 5 years, this is the premier event at the preschool, and I've volunteered some borrowed sound equipment and the music for the night.  Last night was my favorite though.  Music is it for me; it allows me to emote things I have never actually felt.  It's very evocative and creates an intense empathy in me, and sets my head aright again almost every time.  Going back into the bosom of my formative years, hearing some terrible and some fantastic songs from 1980-1989 just made me feel so good.  And at the end of the auction, people said, "No, we want to dance, can you leave the setup for longer?"

It was hard to say no.  It felt normal to keep playing music.  It felt normal to Rickroll everyone (and that should never feel normal).  I think it may be hard for people to see me singing along, or dancing, or laughing, or smiling even.  It's still intensely difficult to go out and be social for long periods.  After a while, our stamina gives out, and we just throw in the towel and go home, climb into bed, and let the sad wash back over us.  Are we acting "normal" when we are out so that other people won't feel so sorry for us?

A few years ago at my old work, after the bubble burst of late 2008, the new head of Administration introduced the overused phrase, "The New Normal" into our professional lexicon there.  In general, I hated it.  HATED IT.  But here I am again, with a new New Normal.

I hate it still.

But here's my new normal: Every day, I wake up and remember that I don't have three sons to care for any more.  I have three sons to care about, but in the day to day, I have two sons to care for.  And they get the very best care I can give them.  Food.  Clothing.  Cleanliness.  Education.  Fun.  Cuddling.  Lots of cuddling.
Some days, extreme amounts of cuddling.  Because the cuddling totally helps assuage the sadness that comes from my first realization every day.