-Saudi Arabian proverb
After all that she went through, it should come as no surprise that Ellie is at risk for many problems in the future. Her eyes were just the tip of the iceberg. For the next few years, we'll constantly be on the look out for developmental delays, physical problems like cerebral palsy, and even mental disabilities. In truth, we won't really know what the full effects of her treatment will be for about 7 or 8 years. It's scary to think about all of these things, but when you're with her it's easy to forget.
Ellie is socially perfect for her age. She's babbling, smiling, giggling... you would never know. There are days when I look at her and think, "Wow! Is this the same baby?" Medical professionals have said the same thing--looking from her chart to her and back again, trying to figure out how we got so lucky. Or blessed.
She's my miracle baby. That's all I can say.
This past week, we've been dealing with another "problem" she will be facing for the rest of her life. Ellie has hearing loss in both ears, a result of damage to the nerve from one of five risks she encountered during her treatment. We've known about it since we left MGH, but were waiting for her follow-up in July. Since April's test, there's been no change - no better, but no worse either. I guess that's a win :)
She still needs hearing aids, which we're getting at Mass Eye & Ear tomorrow. Mike picked out a stylish pair for her. I'm excited to see what happens when Ellie hears all the little sounds she didn't know about before. But I'm also worried that she will be scared by it for those first few days. How do you explain that to a five-month-old? There will not only be new sounds, but the old sounds that she knows will be a lot louder. I don't have any hearing loss, so I can't even begin to imagine what this will be like.
In the meantime, we're learning some sign language to help bridge the gaps. She seems interested but it's too early for her to be able to remember them or sign back. Mike is having fun learning the alphabet, colors, numbers, etc. and he gives me a nightly recap of what he learned that day. I'm learning sign language by osmosis, I guess, because he keeps doing things like complementing my outfit in signs. Or asking me what I want for dinner. Out of necessity, I'm picking it up :)I guess I'm just thankful that Ellie is going to get the chance to hear a little closer to normal, but I can't help worrying about her. Will kids make fun of her hearing aids? Will she struggle to learn language? Will she be able to sing songs and play games with other kids? I know she is already stronger than I am, so I know she'll be fine. But I'm learning that when you're a mom, you want you baby's life to be as easy and enjoyable as possible.
Instead of mourning the hearing loss, or the vision problem, or the scar on her neck, I'll be celebrating them. My baby is here, she can hear, and she can see. She's beautiful and, in my opinion, she's perfect.