Seeing the world through Lucy's eye(s)

Let me take a small moment to introduce you to the sweet little love of my life, Lucy.  Born to us on April 1, 2008, she was 7lbs 14oz 18 inches long and she was a week overdue.  She was a calm newborn, an active baby and has been a feisty toddler.  She was born with red hair, that quickly turned blonde, and and she was instantly the greatest thing that happened to my life.  She was born with ten fingers, ten toes and two eyes, however, only one of those eyes worked.

If you are family or close friends, I am sure you know the trials we have gone through.  The doctors told us nothing was wrong at first, then gave us an incorrect diagnosis, then didn't give us any diagnosis, and then we were just left with questions, but no answers.




What we do know is this, Lucy was born with an underdeveloped optic nerve in her right eye.  The cause is unknown.  The optic nerve in her left eye is also not completely developed, but it is minor compared to her right.  Her doctors told us that she wouldn't be able to see at all.  Some told us they just simply didn't know anything about what she could or couldn't see.  The roller coaster that we have been on for the past four years has been horrible, stressful, and at times, defeating.  Finally, a year ago, we just decided to wait, wait and see what would happen as she got older, and until she was able to talk to doctors to tell them what she could and couldn't see.


Lucy spent three years in the Nevada Early Interventions program being assessed making sure that she was hitting proper milestones.  At three, she was supposed to graduate from the NEI program and transfer into the Clark County School Districts Early Head Start program which is pretty much a preschool for special needs students.  We were denied services from the public school systems because in 2010, the doctors retracted her previous diagnosis of Optic Nerve Hypoplasia and left us without a diagnosis.  The public schools said that because she didn't have a diagnosis that she would be automatically denied and we would need to start filing appeals.

It was horrible when I got that phone call but instead of dealing with the stress of appeals, we decided to keep her at home instead of putting her in preschool.  Shortly after that decision, I got pregnant and we decided I would stay at home and then it was a non issue.

Skipping over a lot of the emotional aspects of our journey, since I could go on for days, we found a doctor here in Washington that is amazing.  He confirmed a lot for us, he gave us some new information that we didn't know.  For instance, he did an ultrasound on her eye and found that her retina had detached from her right eye and he confirmed that she would, in fact, have to have surgery before she started Kindergarden.

Well the time has come, she starts Kindergarden this fall.  her surgery is Monday.  Monday.

This surgery is going to help correct the nystagmus she has and help tighten up her muscles in her right eye so it looks less cross.  Because she has no vision in that eye, it won't ever fully be straight, and periodically throughout her life, she will need this surgery again.

Part of me doesn't want her to have the surgery, because I love her just the way she is.  But I know it needs to be done.  It needs to be done because it should help her see out of her left eye better which will help with safety.  It needs to be done because kids are cruel and although I know that Lucy will be able to overcome 90% of what the world will throw at her, I will do whatever I can to give her the best fighting chance.  If this surgery makes her eyes look more "normal" and stops the nystagmus, then that is what I am going to do for her because I know that down the road, she might struggle less with self confidence, bullies and peers.

And in the mean time, I just try to figure out how to tell my daughter that she will need surgery.  We are sitting her down tomorrow to explain to her what is going to happen.  We decided to wait to tell her until just a day or two before the surgery because I didn't want it to be on her mind for weeks.  I have been struggling with how to tell her.  How to explain it to her in a way that she will understand yet not be scared.

She already knows she has a "broken" eye, and she knows that she needs surgery, although she doesn't know what that means.  But she asks me if the doctor will fix her broken eye, make it so she can use it.  She asks me why her eye is broken.  She makes comments like "I really wish my eye wasn't broken."

How do you answer those questions?  Because I sure as hell know that when she asks me those questions my heart sinks into my toes and I choke up trying to find the right answer.

The date for the surgery has come up so much faster than I expected.  I find myself struggling to keep myself composed when I think about it.  I have also made plans to make this a "special" thing for her.  I bought her some new activities, her nana sent her some books, tomorrow I am taking her shopping for new pjs and some indoor craft projects.  And sunglasses.  I don't know how she will look after this surgery, so I am buying her sunglasses to cover her potential bruising or swelling so we can avoid any questions.  

I have been criticized by other adults that I am "making a big deal out of nothing" by preparing like I have for this surgery.  But the fact is, when you are a parent, even when your kids are sick, you feel awful and will do anything to help them feel better.  When your kid needs to have SURGERY, it's ten times worse.  The mom guilt sets in.  I would do anything, anything in the whole world, to take her place.  But I can't, so instead, I am doing what I can to make this into a positive experience for her.  If it means she gets a little extra spoiling, then so be it.  

As you can see and read, she is a spirited little girl with energy to rival any hurricane.  We are very lucky to have her.  And honestly, who can worry when you look at this face all day...

So I ask you to please just keep her in your thoughts on Monday.  She'll be happy to know she's got the whole internet behind her.