Special Sisters

The other night we were swimming at the pool here in our complex and while we were getting ready to leave I overheard a little girl say to her mom, "Mama, is she special?" She was asking about our little Brooklyn. Her mom replied something that I couldn't hear, then the girl said to her mom, "She's really cute." I immediately got a pit in my stomach when I heard the little girls question. Brooklyn looks old enough now to be walking and talking and just acting like a normal two year old. People outside our little world are noticing her differences now. They notice that she still drinks from a bottle and that we still spoon feed her baby food. They notice that she screams and grunts instead of communicating in a more civilized manner. And I realized at that moment by the pool that this is the first of many many times that I will either over-hear someone noticing her, or even be asked by a curious little kid if she is special. So I've really been thinking what I will say when the occasion arrives and I'm asked, "Is she special?" I will reply, "Yes, more than you know." She is special more than I know. More than any of us know, and possibly will ever know here on earth. I think it won't be until we meet our Heavenly Father that we'll know the why's and what's of Brooklyn, and just how truly special she is.

I'm sure most know about Brooklyn and her special needs, but I've also realized that I haven's shared that information with old friends and roommates who I haven't seen since Brooklyn was born. So I will give you all a readers digest version. Brooklyn was born with a random chromosome abnormality. She has additional chromosomal material on her 17th chromosome. With further testing we learned that this extra piece of chromosome is a repeated piece also from the 17th chromosome. So this gives her 3 copies instead of 2 of this particular piece. And with the testing we also learned that this piece does hold a lot of genetic material (some pieces don't). Since our geneticist and the genetics world has never seen this abnormality before they don't know what to tell us to expect in the future. They do say that in general kids with abnormalities are smaller and have developmental delays. And Brooklyn is/has both. We also learned that if you do have to have an abnormality it is better to have an addition than a deletion. We finally found out about this abnormality when she was about 4 months. She just wasn't holding her head up yet, she was so thin, and her joints were stiff. Our wonderful doctor ordered some blood work to see what was going on, and to try to find some answers. This is what we found. It was a month later that we found ourselves at Primary Children's Medical Center and where we stayed for the next 47 days because Brooklyn had developed that random leaking in her digestive tract. And since that was so random, they just figured it had something to do with her abnormality because it is so random too.

Brooklyn has made major progress since leaving that hospital. We have a wonderful Early Interventions Program, Kids on the Move, who have helped her so much. She is really coming along and we are just so proud of her. She is really becoming a walker. It makes me tear up at times to see her making her way around the house, saying new words and sounds, and interacting with her new baby sister. People on the outside of our little world don't know how far she has come. They don't know how hard we all have worked with her. So the stares and questions will continue to come, and I will just say that yes, our little Brooklyn is very special.

When we found out we were having another girl, I just knew that our two little girls were going to be special sisters. And now that London is here, and I see how much Brooklyn loves her, I know it is the case. Brooklyn is helping me take care of London. The above picture is Brooklyn bouncing London in her bouncer chair because London was crying. Thank goodness London was strapped in because Brooklyn gave her quite a ride. She stopped fussing though! Brooklyn puts the passie back in London's mouth when it falls out. She likes to lay her head down on London's tummy and give her pats. Brooklyn is taking care of London now. London will take care of Brooklyn soon.