I was talking with Greg last night and realized that the one thing that really seems to be bothering me about Ada having Down Syndrome is how she will look. Not that I won’t think she is the cutest thing ever because, well, she already is! She really does have the perfectly proportioned head and looks like a little doll. When I told Greg about my thoughts about how Ada will look he summed up my feelings perfecty. He said that I’m more concerned about people seeing her and immediately making assumptions about who she is based on her looks and this is what is truly bothering me. I know there are times in my life when I have judged others based on their looks.
I remember struggling with this with our first born, Catina. Catina is a good looking kid. Often people make comments about how she looks and at times it has really gotten on my nerves because she is a really smart and fun-loving girl as well. When they see Ada will they limit who they think she is before they get to know her?
When June first got her hearing aids and her hair wasn’t that long a very common comment was “Well, at least she is a girl and her hair will grow out to cover her aids.” I agree, long hair is nice, and June will have the option to show or hide her aids, but I don’t want her to be ashamed of them and feel she needs to cover them up. This is why I insisted on pink aids and sparkly colored ear molds. I wanted her to be proud of her aids and believe that they were a beautiful accessory and tool. I believe that our girls believe this because Catina often asks if she can get hearing aids one day so she can pick out ear molds.
I’m praying my daughters feel beautiful and good in their own skin regardless of how they look!
UPDATE ON ADA:Ada hasn’t gained weight in 2 weeks (and she’s only 3 weeks old). The doctor would really like her to get back to her birth weight before we let her sleep without waking her, so we are feeding her every two to two and half hours around the clock. Since it takes Ada so much effort to eat, we are only bottle-feeding at this time, and using an easy-flow nipple. I am pumping during the day and we are adding a supplement per her doctor to the breastmilk to give her extra calories.
On Friday the Down Syndrome Guild came to visit and gave us a ton of information and the school district came out to begin the process of enrolling Ada in Early On services. We are looking forward to their recommendations!
Thanks for your honesty.
I actually glad you’re just focusing on the bottle right now and not even trying to nurse. One thing at a time, and feeding every 2 hours (start to start, people!) is horrendously time-consuming. Every moment feels like a march from feeding to feeding. I vaguely remember that fog with the twins. I actually get teary-eyed thinking about it because it was so overwhelming.