Oooh Child, Things are Gonna Get Easier!

Today is World Prematurity Day.  Did you know that?  I got up, and got dressed.  We went to a benefit breakfast for one of Joe's former students..I wore purple.  We sat at the table and talked to a parent of one of Joe's students.  She asked how old Maura was..."She's not a year yet, right?"  Yes.  She is.  I explained our story in an annotated version.  She told me her son was a 32 weeker.  As time goes on, it doesn't go away, this preemie/CHOP/epilepsy business...it's still here, and I'm reminded of it often.

I look back at myself in the NICU now.  How naive I was.  They told me we could call Early Intervention when we got settled at home.  I thought to myself that we wouldn't be needing them for long...that since Maura was coming home, things would get better!  She carries her preemieship with her.  Her delays are immense.  She is doing things in her own time.  I really never thought she's wait until she was 18 months old to start walking...and I was often reminded of it as we watched many younger children pass her in milestones by the dozens.

The whole thing seems like a blur.  In ways, I've come to deal with it, but it doesn't go away...It's become part of us, this preemie business.  It always will be!

Boo...a Halloween Costume Part 1

A Ghost!  He declared.

A Ghost?!  I grimaced.  

A Ghost! He clarified!  

I could do much better than a ghost you know.  I've been sewing costumes for years!  A Ghost is the stereotypical easiest costume in the whole wide world!  Seriously, are you kidding Patrick Finn?  

Alas, my headstrong little boy meant it.  I should have known.  Last year, he insisted for months that he would be Mickey Mouse...It was another easy one, but classic and fun...and he pulled it off well.  I tried so hard this year to convince him to be Max.  You know, Max from Where the Wild Things Are? That way, Joe, Maura, and I could all be Wild Things!  I could have pulled that off too, you know...but no...a ghost it was...and I was going to make it worth it.

So when we walked around Thompson Street on our Halloween, my little ghost ran ahead.  I watched as people strolled by and oogled over his costume.  It was the coolest ghost they'd ever seen!  Did you make that?! They'd ask me.  

Yes, dear friends, I made that for my favorite little boy.

Sandy

powered by the one generator line that ran in our window.

My calendars still say October...the generators hummed outside my doors in all directions for days.  Friends are texting about rumors of gas in my town.  It's all almost post-apocalyptic, no?  I joked last week.  Provisions?!  We'll be fine!  

Six Days...Six days, my friends, without power!  We cheered and whooped and hollered in the neighborhood the moment the power went on at 10:30 Saturday night!

It's weird when you start to think it's never coming back.  For the first four days, we had a mere line from the neighbor's generator running to our house.  It powered our fridge and gave us a line to the TV for news and charging station.  We figured out as it started to get colder that we could plug our space heater in too...that was, until the neighbors decided to have their generator wired to their house.  That was when we tripped the system and couldn't run our heater.  

Luckily, I knew of a friend who had a generator.  They had gotten power back days before.  So on Day 5, we rushed over in darkness to get it.  Within the hour, my electrician neighbor had also wired it to our box, giving us about 30% power, but most importantly HEAT!  The temperatures dipped well into the 40s...it was getting really cold!

Life is very different without power.  There are things you have to get done in daylight.  As it starts to get dark, making beds isn't happening, cooking becomes more difficult, and baths are taken by glowstick light!  The dismal feeling of lighting all the candles in the house is daunting when you start to wonder if power is ever coming back!  

None the less, we are here...and we have power.  So now, we can start to get back to normal.  Today is our Halloween.   We'll be getting dressed up later to go out trick or treating.  Hopefully, our neighborhood is in good spirits as we all try to move past the worst hurricane to hit our little town.