Sunday, April 13, 2008

Are You Sleeping?

Are you sleeping, are you sleeping, Brother John, Brother John?
Morning bells are ringing, morning bells are ringing,
Ding, ding, dong. Ding, ding, dong.

“Oh, are these twins?”


“A boy and a girl?”

“No, two girls.”

“Oh, look! This one is WIDE awake, and this one is sleepy.”


When April and Sophia came home from the hospital, although they were nearly two months old, we were able to get to know them and spend time with them as though they were newborns. One thing that I noticed within the first few weeks is that April had her eyes open a lot, and her eyes were even a bit buggy looking. I affectionately called her “bumblebee” for awhile. Sophia’s eyes were open much less. She also slept a bit more. At the time, I had not the slightest notion what was to come for Sophia, except that I thought she might be sleeping more as her brain healed from the earlier brain bleed.

By the time we were able to take the babies out into public, it had become obvious to me that Sophia’s eyes, usually downcast, were not seeing things in a typical manner. Since that time, when the girls are in their side-by-side double stroller, strangers have engaged me in the conversation outlined above time after time, after time. Especially since I thought the same thing at first, I understand the sentiment. They make the comments with a smile. They have no way of knowing that every other person to approach us makes the same observation – one awake baby and one sleeping baby.

The problem is, here is what I hear: “One of your babies looks cute, smiley, and typical. What a miracle considering she began life at less than two pounds. The other one, while also cute, doesn’t look at me because she is effectively blind. She looks like she is sleeping, but in reality the environment is simply too much for her to take in, and she closes down. She also can’t move her body in the same way as her sister. She is atypical. Poor baby.”

April & Sophia (who does hold a bottle when her hands are positioned for her - yea!!!)

I understand that this has more to do with my journey of acceptance of my daughter’s differences than it does what anyone else thinks. I also imagine that, one day soon, some people will simply look away when they see Sophia because it will be obvious that something is “wrong.” In fact, the tide is already beginning to change. Recently, people have begun asking how far apart in age the girls are, because April looks older (although their heights and weights are nearly identical, April’s head is bigger and her development is much more advanced).

So, please, keep telling me that Sophia is just sleeping. Maybe we will all wake up one of these days.

April watching swimming lessons (Jolie is in the closest corner of the pool)

Sophia's pretty eye, open wide


Satina said...

I have read your complete blog. This is amazing. What people do not know about you and your family from reading this is that you always have such an angelic presence. You are usually smiling (at least when I see you) but more than that your face is always, I don't know, "glowing". Even when you are struggling in life's trials, you're testimony and your love for your family shines through it all and quite literally illuminates you! I love you and value your friendship more than you can ever know! Thank you for sharing your story with the world, there are endless possibilities of the good it will do. Both theraputic for you, informational for friends and family and helpful to others who are going through simular trials. Take care of yourself and always know you are loved and admired by so many!


Julie said...

I agree with Satina. Hi Andrea! I have been following Kim's blog and hoped you would start your own so I could connect with you. I love seeing your daughters! They are all gorgeous! I also love working with children who are handicapped or disabled in any form and so I will follow your blog and learn from you. I'm so glad to reconnect with you and I put a link to your blog on my site. Visit my blog at
Take care and kiss those sweet babies for me.

TamBaum said...

Welcome to the blogging world!