How I miss those eyes. When Ainsley was born she didn't open her eyes for weeks. When she was in the hospital the ophthalmologist saw her and after checking her over, reassured me that he was not worried about that. But I was. Even with all the other, bigger, things we had going on. She did finally opened them and I was so thankful. We learned she had a condition called ptosis, the medical name for droopy eyelids.
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.