What a difference a year makes

Hello Fellow Families of Glorious Children who Happen to Have Cortical Visual Impairment!

One year ago today, I published the first post of CVI Momifesto as a way to vent and to gain perspective of my experience as the mother of funny, strong willed, curious girl who happens to have several diagnoses and who also happens to be cuteness personified.

It’s been quite a year.

I wanted to comment on the year in this post.

But, as happens with life and especially with life with a kid with special needs, a lot happened over the summer.  There hasn’t been much time to process or to have a coherent string of thoughts.

I started to write the post about the year and the summer and this is what I wrote instead:

Over the past 3 months, my girl, Eliza, has turned 12 and graduated from elementary school.  She wore the same dress her sister wore when she was 12.  She enjoyed  being a part of the ceremony, grinning from ear to ear as she walked by all of the kids dressed up in their fancy graduation clothes.  She laughed with her teacher. She danced with her dad after the festivities.

This kid.

This kid came into the world defying odds given to us by doctors in crisp white coats.
Baby E blk white

This kid turned 12.
my girl E at graduation

There was so much drama around her birth.

The doctor in the whitest coat I’d ever seen, with the beard that had been trimmed so precisely I sometimes wondered if it was fake.

The doctor observed us, the anxious couple – husband and very pregnant wife – from behind a desk of polished dark wood.

On the wall behind him, framed diplomas and plaques all attested to the depth and breadth of his infinite knowledge.  To my right, on his bookshelf sat at a book with the title, “How to Give Bad News.”  (It’s interesting the things you remember at a time like that)

It was a very serious moment from a very solemn doctor in a very white coat.  Austere even.  The whole painful situation.

The doctor told us she would never walk, talk, breathe, swallow, see, hear, speak — you name it — she wouldn’t do it.  As a matter of fact, she would probably never leave the NICU.  She would have no quality of life…..medically obligated to advise termination….  (“He really needs to reread that book.  He sucks at this,” I found myself thinking.  It’s interesting the things you think at a time like that.) 

And, I kid you not, Eliza – who had not been much of a mover or a shaker in utero – did a full on somersault as if to remind me just who we were talking about here.

And, The Doctor, vastly knowledgeable about many things because the rectangles on walls behind him told me so, had many other things to say after that.

But, I couldn’t hear them.  Not really.

Because Eliza had reminded me that she had not  been given her say in the matter.

We didn’t listen to The Doctor much after that.

And, when she arrived quickly, about a month later, on her own terms, and without the horror story he had predicted, he called me later that morning in the recovery room.

I had not expected to hear from him.

“What gives?” he said, without any of the customary pleasantries you might expect to give someone who has just given birth.

I explained that she hadn’t needed all of the medical interventions he had predicted.  No NICU.

A pause.  Then, he said not a little smugly, “Well, let’s see her when she’s 5.”

See that?  See what he did there?  

“Let’s see her when she’s 5.”

What The Doctor could not know – what I could not know – was that that phrase would launch my journey with this kid.  That smugness, that assumption that five years would prove what a mistake we had made – the callousness, the coldness, the clinical certainty that her life did not have value and that it was his decision to make – sparked a fire in me that exists today.

When she did turn 5, I thought a lot about taking Eliza to see The Doctor again.

I thought a lot about it.

I entertained many a revenge fantasy about it, to be honest.

Some vandalism may have been involved in a couple of the fantasies, but I’ll just leave that there.

I ultimately realized that, if I did take her to see him,

because she does have some disabilities,

because she is built a bit differently than your average kid (whatever THAT means),

he could look at her

and feel completely vindicated.

I,

looking at the same girl,

knowing her the way I do,

would happily introduce him to her in all of her unique Elizaness, (Maybe I’d hire an orchestra or a mariachi band to accompany us to the office of austerity for the introduction…fireworks?  Too much?) 

and feel completely vindicated.

And, there you have it.

Our impasse.

Proving him wrong was not the way to go about this.

There was nothing to prove.  

We have a life to live.

I live with a beautiful, challenging mystery of a kid who has screwed up my sleep for the past 12 years.  I’m still trying to figure her out.  Sometimes I lose my patience.  Sometimes she loses hers.  She pats my arm and pulls me close for kisses.  She loves her people.  She is intensely curious about the world.  Nothing thrills her more than holding hands and running with one of us in an open field.  I am embarrassed to say that I have only recently – too recently – figured out that she understands more than I gave her credit for.

She loves me in spite of my imperfections.  She accepts me for who I am.

We remain a work in progress.

 


 

So, a year ago today, I started a blog to get some of these stories off of my heart and out of my head.

There is work to be done, yes.  But, we have nothing to prove.


 

Holy cheese!  I just wrote about Eliza’s birth on Labor Day!  I just got that!  And, it’s 3 a.m. so I’m keeping this ridiculous exclamation right here!  Huzzah and so forth!

Good night! Or Good Morning! Or Whatever!

 

 

 

 

 

 

 

 

 

 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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