Tomorrow

Sweet girl, tomorrow is a big day for you.  And you are so blissfully unaware.  I think that's the best thing about this bump-in-the-road situation.  

You are so young, and with the highest expectations, prayer, and hope, it should be just that - a bump-in-the-road.  

A small, almost forgotten, blip on an otherwise long and healthy life.

For the past month, our little Nelle Belle has been rocking an early Halloween costume.  

My little pirate.

She was diagnosed with infantile (congenital) esotropia four weeks ago.  

Her diagnosis and all factors leading up to it have been the biggest lesson for me in being the best advocate for your child as possible.  

 

Andrew has thought Nelle was cross-eyed from the beginning.  And she was.  As most newbies are.  It seemed to clear up for the most part, but something just kept nagging me every once in a while.  She didn't seem to make eye contact with us well.  Henry was so engaged with us early on, but he was also the first child.  We had no one else (except the dog) to focus on.  And all babies are different and you hear all the time not to compare children.  Henry was engaged, but also HIGH maintenance.  Nelle is so mellow compared to him.  So I chalked it up to personality.

But the nagging didn't go away.  

We saw a friend's three-month-old, just a week younger than Nelle, and I felt sick. to. my. stomach.  Her eye contact was limited and fleeting, nowhere near where it should have been.  At that stage, she should have been focusing on us much, much more, instead of predominately gazing past our faces.

My worries and Google searches were running rampant - 

can she even see us, is there a vision issue, is this the first sign of autisum, is there a neurological issue?  

It was a relief to have the opthamologist's diagnosis to eliminate so much, but at the same time, it caught me totally off guard.  I honestly felt like yes, she was behind with her focusing, but he would probably give us exercises to do with her, and we'd catch her up fairly quickly and move on. 

There was so much to process, and a lot of it was guilt.  

The patching we've done on alternating eyes, two to three hours a day, hasn't seemed to help - which is what our doctor prepared us for.  Most likely, tomorrow, I'm expecting him to schedule surgery for you.  He'll operate on both eyes, tightening the muscles, and that will be it.

I've felt guilty for being so shaken by this when you will likely never know it even happened.  When others have to deal so, SO much more.  

It feels selfish.

And I feel guilty for asking why God would make her this way and mad that my child has to go through this.  And that feels selfish too.  Really selfish. 

Because he's made her exactly as He planned, and she is perfect to us.  And she will be fine.  

And not everyone is so lucky, so blessed, so wonderfully blessed.

--

The past four weeks you've grown so much.  

Developmentally, you've hit so many milestones and that, paired with a second opinion, has made me really confident in your diagnosis.   

I still have doubts, anxiety and fear creeping in that leave me with lots of what-ifs.  Surgery of any kind is scary with a baby.  What if it doesn't work?  What if it doesn't fix your eyes long-term?  And you have to deal with this again...and again...and again?  And it affects your vision and depth-perception?  And you feel different from other kids.  Or embarrassed.  And they make fun of you. 

It feels dramatic and silly and at the same time, necessary.  

 I guess it's all part of the process, yes? 

The what-ifs are the worst.  

I think tomorrow, we start to eliminate the what-ifs.       

We say our prayers, we trust, and tomorrow, we move forward.

We love you so SO much, little one.  So much.