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They told me it could be corrected with surgery and that her eyes would look "normal". Being naive I took that comment at face value. I admit, I looked forward to the day. Little did I know that just a few months later I would give anything for them to look just the way they did right then.
When Ainsley was 9 months old she went in for her second cranial reconstruction to repair the sagittal craniosynostosis and the bulging of her forehead that it caused. In the process of all that bone being moved around (although the the result was good for the forehead shape and gave her brain room to grow normally) the ptosis worsened dramatically and her eyes appeared slanted. Even though she was such a baby at the time, and almost 3 years have past since then, I still miss seeing more of her eyes.
Over the years we have been in the process of having Ainsley evaluated for a ptosis repair, a tarsal switch procedure, which we thought we might do this summer. We met with the surgeon again today and decided to wait until early September so we don't have to keep her out of the sun all summer. He also said that while this will improve her eye function some she may still require a frontalis sling or another procedure as a teenager. TEENAGER.
My expectations have changed. I no longer hope for "normal", I don't even hope for "like she was before". My hope is that everything goes well (there are no complications) and things are fixed well enough that we no longer have to endure stares in public, that people will stop asking if she is blind (she can see just fine) or commenting that she "looks like she needs a nap". I want people to be able to look into her eyes and see her. It feels like a long way off, but I know September will be here in the blink of an eye.
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I hope everything goes well, too. And, you're right, September will be here before we know it.
ReplyDeleteI'm sending you some hugs right now. This post made me sad for you. So many things taken for granted... no more.
Much love,
Christy
You know, when I saw the last post about her crawling, I thought to myself that her eyes looked beautiful and bright. I'm sorry you get stares and stupid questions, but I think she's got the prettiest smile and a great twinkle in her eyes, no matter what they look like.
ReplyDeleteI know what you mean, about the stares, questions, etc. My little girl is now 7, and I really don't notice that her head is narrow, and elongated - except when I try to put an ordinary child's hat on her head, and it doesn't sit right! Once when she was smaller, and had less hair, it was more noticeable, and one day a child in a shopping centre said to me: I think your girl is ugly. I replied: Well, I think she is just as beautiful as you are! Sometimes people don't look past the external differences to see how truly beautiful our children are. God bless.
ReplyDeleteFirstly, Susan thank-you for your comment.
ReplyDeleteI need to get rid of that A.F.O thought of What if?
I have always thought Ainsley looks beautiful and have never noticed the eyes. Perhaps the heartwarming smile and continual onward style of determination wins it over for me.
I see brown eyes that are big and melt my mamma heart.
People who stare don't understand how rude and ignorant they are. We are given insight into so much more in the world than they could perhaps grasp. On my strong days I lift my head higher right back at them and ask them if they have a question for me, usually they will look away then. On my weak days the hot tears well and I want to be a recluse in my home.
She is beautiful, strong, and will continually conquer the world, and you will too!
Hugs and all the love in the universe from me to you.
I can tell by her pictures that she has beautiful eyes. They are AINSLEY'S eyes. Those that love her don't even notice, I'm sure....in the same way that those who love my daughter don't notice her trach, or hearing aids, her scar left over from her cleft lip repair. September will be here soon.....wishing the best possible outcome for you and your sweet, beautiful daughter.
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