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 a post about the year and the summer.

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 starched 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 trimmed so precisely

I sometimes wondered if it was fake.

The doctor observed us,

the anxious couple

husband and very pregnant wife

from behind the safety of an expensive desk of polished dark wood.

On the wall,

framed diplomas and plaques

all attested to the depth and breadth of his infinite knowledge.

To my right, on a bookshelf stood 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.  It was a moment that required a lot of “verys”.  Everything was “VERY.”

The whole painful situation.

The Doctor told us she would never

walktalkbreatheswallowseehearspeak

It all became one long horrible word to my grasping, uncomprehending brain.

Basically, 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…..medicallyobligatedtoadvisetermination….  (“He really needs to reread that book.  He sucks at this.”  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.  The sudden shift in my body was a literal punch in the gut.

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.

When she arrived quickly,

about a month later,

on her own terms,

without the horror story he had predicted,

he called me later that morning in the recovery room.

 

“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 cold clinical certainty that her life would not have value.

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 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 even hire a mariachi band to accompany us to his office for an introduction?  Maybe fireworks and a pony for everyone?  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!

 

 

 

 

 

 

 

 

 

 

Hope has work for us to do

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old.  I had been researching CVI and how to modify our home environment for Eliza for a couple of years.  We had seen Dr. Roman-Lantzy a couple of times.   I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do.  CVI might  improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

&

See

&

Hope

?

If that is the most passive piece of advice you’ve ever received, then raise your hand – or wait – Don’t raise your hand:  Stare at your hand and wait for it to raise itself.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope.   I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap.  My jaw fell open. I wanted her to ask a follow up question.  I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong.  Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible.  The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

 

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference.  It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day.  Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching.  I hope she found the support she needed.  I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated.  How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live.  For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down.  For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy.  It requires no effort at all. It is dull and lifeless.  Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard.  Hope requires energy.  Hope is fueled by love.  Thankfully, love is the easy part.  We have an abundance of it.


Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you.  Finding them makes you feel less alone.  Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope.   The hope I know what to do with.


“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

– Jan Richardson, The Cure for Sorrow

 

This is what is rattling around in my busy head these days, fellow families.  Some days, some years are like that I suppose.  Most days I do my very best to listen to what hope tells me to do.  There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford.  I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.

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