Last year, I was a little emotional around this time of the year. The one year mark of Amelia's diagnosis was looming over me and I realized I hadn't allowed myself to fully grieve and process what that meant. Some of that was because I simply didn't want to, but, in retrospect, it was largely because I didn't feel entitled to.
I knew of so many others who were dealing with very traumatic losses and life-threatening illnesses that I felt it wasn't OK for me to grieve. I mean, Amelia has ONE good eye, right? You can certainly live life with one eye. What's the big deal?
I see now that this logic is flawed. There is no litmus test for pain. If your child is hurting, you are allowed to hurt along with them. If your child has been given a challenge, it's OK to grieve for that. It's OK to feel like they got ripped off. It's OK to wonder why it happened to them.
It's OK to be sad.
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When Amelia was two months old, Jason and I noticed that she didn't seem to focus on anything. I noted that she always looked to the left when she was laying on her changing table or on the floor. Her eyes seemed to cross a lot. We were midly concerned.
I mentioned our concerns at Amelia's two month check up and was told by the doctor (NOT my beloved Dr. J or Dr. P)that she was fine and it was normal and I was over-analyzing things. I left her office feeling uneasy.
They don't call it mother's intuition for nothing.
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A week later, I made an appointment with Dr. P. Normally, Dr. P is a boisterous, funny guy but that day he was very serious. He laid Amelia on the exam table, took one look at her eyes and said, "I'm very concerned. I'm going to make a phone call."
Less than ten minutes later, we were sitting in Dr. H's office hearing him diagnose Amelia with a rare eye condition practically NO ONE has ever heard of.
Less than ten minutes after that, we were in a retina specialist's office, listening to him confirm the diagnosis and trying to get our brains around the idea that our infant was blind in one eye.
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Easily the worst day of my life. But two years later, I can honestly say that the fear of not knowing what to expect was much worse than actually experiencing it.
Not that it's been a picnic. Did you know my toddler wears a contact? I probably don't need to spell out what a nightmare that is. But we manage. Sometimes I have to take her to the doctor just to get her contact back in. This doesn't seem strange to me anymore.
It's just what we do.
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Some days, I still feel sad. I feel sad that my baby has to wear a contact in an eye that can't see. I feel sad that she wears glasses as protection for her good eye rather than for vision correction. I feel sad that her eye isn't growing normally and that she's at a high risk for complications like glaucoma. I feel sad that other kids notice her difference. But mostly? Mostly, I feel just like I did when the other girls were toddlers.
Tired. And so in love.
And compared to a year ago, that's major progress.
