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.

1 comment:

NormalDiedWithMax - A Moms Journey of Grief said...

I also hate the phrase "new normal". I named my blog "Normal Died With Max", because I don't think anything will ever be NORMAL again, how can it be, one of my children is dead? Yes, I've learned to live around the hole in my life, but it's far from normal to have to do so.