Letting go of your “chair”

I am lucky to have a husband that has moved across the country with me so I can follow my dream.  When we met, he was in TV too, and was willing to try some other fields so that we didn’t both have to work odd hours, holidays and be called in at a moment’s notice because of one house fire or another.  When we lived in Albany, New York, he got a job as an underwriter at State Farm Insurance.  It was a maze of cubicles with hundreds of people working a few feet away from each without ever really conversing.  I heard it described by several people as the “land of the golden handcuffs.”  No one really LOVED working there, but it was stable and paid well, so they stayed.  Charlie is a very creative and social person, so it KILLED him to work in this environment, but he did it so we could save for our honeymoon (Thanks hon!).  Life at the State Farm cubical farm was pretty easy.  There wasn’t enough work to fill the 8-hour work day.  No one fought and there was never any real conflict.  (The closest Charlie came was when he made a smart-ass sign to protest one of his good friends being moved to another department and almost got called in to HR. ) But it is in most people’s nature to complain about something, anything really.  So when there was nothing to whine about, like in this State Farm sea of half-walls and whispers, my husband’s co-workers complained about their chairs.  How soft they were.  How hard they were.  How tall they were.  How short they were.  How swivelly or non-swivelly… you get the picture.  Here were these educated, well-versed adults who had, like all of us, at least a few really shitty jobs in the past, complaining about their chairs. So much so that, every day, Charlie would come home and relay the newest details of Chair-gate. From the outside, it was pretty entertaining.

As I look back at my life BL (Before Lila), I can see a lot of chairs.  As my mother-in-law recently pointed out to me, I was pretty stressed out while planning my wedding.  I can remember a particular meltdown over a kegerator that Charlie still cringes about to this day.  I was desperate to get a new job when my contract in Albany was up.  I’m pretty sure I’ve lost at least a little sleep over outfits, haircuts, math tests, you name it.  But when you reach those defining moments in your life, like learning your new baby has Down Syndrome, you really want to go back in time and slap yourself in the face and say “You are wasting your precious time worrying about THAT!?!?”

I am a different person that I was two months ago.

It’s not just the words Down Syndrome that have changed me.  It’s not just becoming a new mother or finding a new closeness with my partner on this journey.  It’s a certain calm that comes when I have done my daily worrying of “Can I do this?”  It’s a new set of glasses to see all those little things through.  And I have to say, its really hard to not look around me and say, “Are you kidding me! I just spent four hours on the phone with physical therapists setting up appointments and evaluations and goals for my two-month-old daughter and you are worried about where you sit/what you’re having for dinner/that pimple on your forehead/insert daily problem here.

I know that life is relative, but its also really easy to forget that, most of the time, it’s really, really good.

In my case, it may be different than what I expected, but it IS really, really good.


She will move mountains…

What a month it has been! Every day we are getting to know the little angel that has taken up residence in the bedroom next to ours. Every day we are learning what it means to be new parents and those entrusted with a special gift. I am already amazed at how fast she is growing.  I tell Charlie all the time that I feel she is looking into my soul when she stares me down with those beautiful blue eyes.  It’s like she is making sure I see her for who she is, instead of the label some people will see when they look at her.

At first we were bombarded with information about Down Syndrome, letters and books and pamphlets.  Some of it comforting, others too difficult to read even now.  It took me a month to read the letter from the geneticist listing all the possible problems she could encounter. One video left me with two ideas that have stuck in my mind.  One was a doctor describing how this change can affect your entire family.  He said, “You have to make a place in your family for the disability, and then you have put the disability in its place.”  Immediately, I thought, “Yes!”  This disability will NOT define us, it will be one part that will determine a few twists and turns, but at the end of the day they will not say, “Charlie and Latricia have a child with Down Syndrome.”  Instead they will say, “Charlie and Latricia have an amazing daughter that brings joy to everyone she meets.”  The second thing I learned from that video is just because Lila has an extra chromosome, it doesn’t mean that she didn’t inherit other things from us.  Certain physical traits, even things like intelligence and athletic ability, are still there.  Some people just forget to see them because of her beautiful, slanted eyes or perfect nose with a little less of a bridge.  I promise that I won’t forget to look. I will see the footprints that she chooses to leave.

Tomorrow, I turn 30.  Years ago, I told myself that I would be a mother one way or another before I hit that milestone.  As we tried and tried to get pregnant, praying for that thin pink line every month, that dream seemed less and less likely.  And then it happened.  All of the tears I had cried during our battle with infertility seemed silly as I saw her move around on those ultrasounds.  From the other side, the journey always seems easier.  I’m sure that, years from now, I will look at this time and think the same thing.  Why did my heart feel so heavy for so long?  How could I have wished for anything different than my little Lila?  Even before we heard the words Down Syndrome, she already made our family better.

Some days my heart still hurts for those things that may never be part of our story, and just as quickly I am reminded of my little Lila’s strength.

Lila Rolls Over

When she was just eight days old, this 6 Pound baby decided it was time to set the bar high. She rolled over!  Something one doctor wanted to label a “random burst of energy” now happens every day. It’s like she’s looking up at me saying “Don’t  count me out Momma, we will show them all together.” and my heart says “Yes, Lila we will.”

As I was getting Lila’s nursery ready, I was searching for something to put on her wall.  A saying that would describe the little girl with the strong kicks that were helping me get to know her before I saw her face.  I came across this, and it seemed perfect.  Today, I believe it even more.

My little Lila is already moving mountains.