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  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


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.