Tuesday, January 20, 2009

It Has A Name

A few months back I posted this. Baby B was only just over one month at the time. There was another motivating factor for my writing that post, one that I never mentioned. Something that has worried me since she was born both for vain reasons as well as valid ones.

When Baby B was born we quickly noticed that she really couldn't open her left eye at all. It pretty much stayed closed all the time and she'd peek out of her right eye at us. We affectionately called her Popeye during that phase. We were told not to worry about it. That it could have happened for many reasons - position in the womb, during birth, or something like that. We were told that it would likely get better or possibly go away, by the time she was six months. It hasn't. It has gotten better, which is good. But when I'm editing our photos and I'm removing red eye it's painfully noticeable how bad it still is. What had me the most worried was that I noticed her eyelid is often partially covering her pupil which makes me wonder how much her other eye is overcompensating.

The part of it that plays into the post I linked earlier is that people are starting to notice it. One girl pointed out to me "There's something wrong with her eye." other comments have been like "Oh, she's got a lazy eye." and that sort of thing. It's as though it's the only thing they see. Meanwhile Miss A is getting the "OMG! Her eyes are SO BIG and SO GORGEOUS!!" It's only a matter of time before both of them aren't too young to be oblivious to the comments, the meaning behind them and suffer hurt feelings.

On Monday we had an appointment with our Optometrist. He did as many tests as he could and told me that although her left eye seemed a bit weaker it was still considered normal - vision wise. But he did tell me that her 'condition' has a name - Ptosis. He also referred us to a specialist in a nearby city. He will be able to investigate further and determine whether or not he thinks surgery is necessary now, or perhaps later.

I'm glad to finally have a definitive answer about what is up with her eye, and plans to look into it further. I often feel guilty for being concerned about it when I know that there are kids out there with much more serious issues and parents with HUGE worries regarding their children's health.

Yet, I still find my heart sinks when I look at her sweet face and see how her poor little eye looks so tired. And it sinks even further when I get those comments that one day soon she'll be able to understand.


bon said...

They can fix that with surgery!! I know you know that... but they really can! Just last year a lady in my ward (church congregation) had that done... you would never know now. So yeah... probably not now, but later in life you can get that fixed.

And what? Now you are somehow shallow for wanting your daughter to have an easier time of it? For not wanting her to be compared unfavorably to ANYONE, not even your other daughter? Sure, life is hard, but we do what we can to ease the way for our kids where we can. But you should know that she will probably have until at LEAST five years old before she really notices the difference. Dude... there is a little boy in Birdie's class with one profoundly shriveled arm, and since I wasn't volunteering in her class at school this year I had no idea. I never heard anything about him from the Bird until some time in November when she was telling me something else entirely about the kid, and had to explain to me why what she was telling me was relevant was that he had only one regular arm. November... and no more "mention worthy" than oh, say, the color of his hair. Less, as a matter of fact, since I had longe since heard raptures about the amazing color of another boy, Callum's hair.

Plus there was a girl a year younger than Birdie who had a huge, lumpy red growth on the end of her nose... and I mean HUGE, she got it removed when she was four and a half (waited till then so she could withstand the surgery better) but the kid was barely cognizant of any changes except she could see past her nose better.

I guess what I am saying is that it really is no big deal. People won't see her droopy eyelid when they look at her... they will see HER, and if they don't? Well... heck with them anyway.

bon said...

Huh, guess I coulda written an email or maybe a BOOK!

Lynanne said...

I personally think Baby B is just as gorgeous as her sister. She has the cutest cherub face, the sweetest smile and such beautiful clear blue eyes. Seriously. You have two gorgeous girls. I'd say I am envious, but when they become teens...whoa! ;)

I told you that we faced a similar diagnosis with our son, except more than just his eyelid was affected at birth. We took him to the opthomologist because we noticed he couldn't look upward with the affected eye. The response? "When he gets taller he won't have to look up as much." Ouch. How ironic that the most hurtful comment we got was from a doctor. So, I can relate a little to the worry and desperately wanting your child to look normal.

With time, my son's eyelid got better. Also he lost his baby cheeks, his face thinned out and his eye didn't look as squinty when he smiled. Now, it pretty much looks normal. He still gets the stares because his behavior is far from normal, but I'm starting to get used to those as well. A mother's heart is so tender, isn't it?

elizasmom said...

What bon said! I know a mom's heart weeps for anything that could give her kids a harder time, so I certainly hear you, and I would be right there with you if it were me. As it is, I hope Miss B's eye improves so she doesn't have to deal with glasses and such, and I hope the doctors you consult can help resolve the issue in the quickest, most painless way possible.
But the little ones, mostly they don't give a rip, has been my experience at Eliza's school, where all the classes are at least half kids with special needs. Braces on your leg? Can't talk? Wear funny outfits? Whatever, let's go play blocks!

Mama D said...

I agree with you all that at least for a few years, kids will likely be oblivious. It's actually adults that I worry about for now. If it were Miss A with this condition and people asked me what was wrong with her eye she'd notice and likely tell them off too! The other day a girl at her preschool called her 'little A' and she was all 'I'M NOT LITTLE A! Mama, she called me little A and that made me MAD!!' And, she keeps bringing it up too. It would bother her. Oh well, I guess that's parenting. Helping our kids deal with things, be it kids calling them little or adults saying there's something wrong with their eye. It's all character building I suppose.

Jenn said...

That is good that you have a name for it now and have a plan of action. Don't feel guilty for how you're feeling. I agree with elizasmom - a mother's heart etc.

Elicia said...

I know how having anything others might find imperfect about our perfect babies can be painful. There is a lady on the message board I use (Babyfit) whose daughter just had surgery done to correct this very same thing. I think her daughter is 3. Here is a link to the pictures of her daughter's surgery:

Just a warning, it could be a little disturbing to look at.

She's super nice and I'm sure she wouldn't mind having you message her if you have any questions about what their situation was.

Anonymous said...

Hugs. Most of all, hugs. I know that sinking feeling that hurts so much when your children are concerned. But, as all comments before mine said, most likely all will be just fine in the end.

And yes, you have two beautiful little girls!

Eliza's Grandma Texes

beth - Total Mom Haircut said...

I don't think you need to feel guilty over being concerned about the insensitive comments of others, especially when it comes to how they effect your children. I mean, goodness, none of us wants out child to have a hard time or be compared, especially to a sibling. I'm glad you are making progress on this though and I'm sure all will be well.