Tuesday, January 28, 2014

My Fair Child

Finding out you are pregnant is such a magical experience. You suddenly start planning your life - imagining what you little one will look like, wondering what activities they'll enjoy etc. You have in your mind all these ideals and everything, in your mind, will be perfect. As the pregnancy continues you get more and more anxious to meet your new little creation. And then the birth comes and at the end of it you are handed a perfect little bundle, straight from heaven (or in my case, two little bundles.) You never in a billion years would have imagined that your perfect little miracle could have any challenges or imperfections.



When Charlie was born, all the nurses exchanged "the look." None of them said anything, of course, and at the time I didn't really notice it. I was so wrapped up in the beauty of the moment. Holding him and his little sister tight, seeing their perfect little fingers and toes. I noticed his snowy white hair, of course, everybody did. But it wasn't until I saw his eyes that I thought something might be wrong. At birth, they had no pigment. None at all. They were red as could be. In certain lights they looked brown, but deep down I knew they were red and I knew what that meant. But I wasn't ready to admit it yet. We had various doctors tell us different things. Some said they wouldn't be concerned, that they'd seen plenty of babies with white hair. One doctor bluntly told us that there was absolutely no pigment and that he was certain our little boy had albinism. That was when he was 3 days old. I was heartbroken and when I left the office the waterworks began. Forrest helped calm me down and we decided that we would go see a geneticist. The geneticist gave us a lot of hope. She told us he looked happy and healthy and that if he did have albinism it was a very minor case since his eyes didn't scan back and forth (it's called nystagmus). She referred us to an ophthalmologist who said he thought it was albinism but he couldn't be certain yet. A few weeks after that appointment, the nystagmus began. It wasn't too bad at first, but it continually got worse. His eyes never held still - they were constantly scanning from one side to the other, never focusing on anything. Nothing happened for a few months, but as Charlie got older I began to notice a severe lack of visual response. He wouldn't look at me. He never made eye contact. He couldn't follow objects with his eyes. I knew it was bad, but I kept pushing the thoughts that something was really wrong out of my mind. Then at his 4 month checkup the pediatrician started asking questions. He was examining Charlie's eyes and Charlie wasn't responding to the light. He asked me if he ever responded to visual cues. I said no. Then the doctor started crying. That was unexpected. He told me to have hope, but in that moment as I started tearing up, I faced the reality for the first time. The reality that my perfect little boy might be blind. My sister had come to the appointment with me and she put her hand on my shoulder. I tried to keep it together through the rest of the appointment, but when I got home I cried and cried. For about 2 days. The pediatrician referred me to an ophthalmologist here in SLC and I made an appointment for as soon as we could get in (about a month later). One day during that month, Forrest and I were getting the kids in bed. We were holding them and singing to them. I had Charlie, and as I was singing, he looked up at me for the first time and made eye contact. It brought tears to my eyes, and when Forrest and I left the room he held me tight and we both reveled in the moment that we thought our child could see for the first time. As the days and weeks went by, he quickly began looking at bright colored toys, following things with his eyes, opening his mouth when I'd move a spoonful of food toward him, and reaching for objects. By the time his ophthalmology appointment arrived, I knew he could see, and that brought so much peace and joy to my heart. The ophthalmologist examined Charlie's eyes and then spoke the words that I was finally prepared to hear "There's no doubt he has albinism." I was surprised by how well I took it. And Forrest too. The odds of having albinism are 1 in 17,000. And our little boy is the one. That means that both Forrest and I carry that recessive gene, and that we have a 1 in 4 chance of having children with albinism. That part is shocking, but we were finally ready to admit it and to face it. The doctor answered our questions, told us that at the moment Charlie is legally blind (even though he can see, it's not very well) but that hopefully his vision will improve dramatically in the coming years. He wrote Charlie a prescription for some glasses that would help protect his eyes from light and that would correct his astigmatism, which is pretty severe.

After the appointment we went to the optical center where we spoke with the pediatric specialist to order his glasses. She brought up some concerns that I had never considered - namely, how Caroline would cope with Charlie wearing glasses. She suggested that when the twins get a little older and more aware, that Caroline will feel left out because she doesn't have glasses. And that we may get a pair of inexpensive child sunglasses and pop out the lenses for her to wear if she gets upset by it. I'd never thought about how his condition might affect her. The more immediate effects would be that I can no longer put my kids right next to each other on the ground to play, because Caroline would be constantly trying to grab the glasses. Which she does. It's been an adjustment, but the glasses do help Charlie a lot. He does pretty well with leaving them on, but every so often (usually when I leave the room) he pulls them off as quickly as he can. I try to get him to wear them all the time, like he's supposed to, but it's hard. I take them off when he gets tired because he gets really frustrated with them if he's trying to rub his eyes (which he does a lot when he's tired.) I take them off when I'm nursing because Caroline won't eat if she sees them. And I take them off for bath and naps. They get dirty so fast because he pulls them down and sucks on the lenses, so I feel like I'm constantly putting them on, taking them off and cleaning them. It's definitely the hardest on little Charlie but he is a really good sport about it most of the time.



It's been an emotional adjustment too, getting used to seeing our little boy wearing dark lenses. To never get to see his eyes. To accept the fact that he will likely wear glasses his entire life. And to think that he may never be able to drive a car. That he might struggle to read and might have to use a magnifying glass to do his school work. But when I get feeling particularly overwhelmed by it, I remind myself how grateful I am that he is healthy. And how thankful I am that I have him and his sister. They are truly little miracles and I love them with all of my heart.

6 comments:

  1. Holly, I love you. You are amazing, and so are Charlie and caroline, oh and Forrest :) I can only imagine what this would've been like for you. You're a wonderful person and mom and wife. Please let me know if you need anything. I live right next door :)

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  2. Ooh, Holls! When I got to the part of him looking at you I got chills and I was nearly crying by the end! I love you guys! You are so blessed!

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  3. Charlie and Caroline are both very luck to have you as their Mom! You are an amazing Mom! I'm not surprised. You are awesome at everything you do.

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  4. I really loved reading this. It is so hard and so overwhelming when you find out your perfect little angel fresh from heaven isn't as physically perfect as you just figured they would be. Both of your littles are darling! You guys are amazing!

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  5. I think he's just a styling dude with his glasses.

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  6. Both of your babies are beautiful! And they are obviously very loved

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