Let me begin by confessing that I really should be folding laundry but instead I am excitedly distracted by your questions! It’s like when my husband wants to tell me something about how a bird’s chirp is a perfect triad the same pitch as say, the 3rd bar in the 2nd movement of Rachmaninoff’s piano concerto #2. Really, I have no idea what he is talking about, and perhaps under other circumstances wouldn’t find it interesting and yet ask him to explain anyway. Because Down Syndrome means a lot to me and I want everyone around me to know about it and how wonderful Ella is. So here is round two of Answers.
Mel asked: Just curious if you have had direct conversations with Jakob about DS yet. No doubt it’s already a term that he’s heard verbalized many times, and as such will you wait for him to ask questions about it or have you already brought it up?
In short, no, we have never had a direct conversation with Jakob about DS (Jakob is 3yrs old). I was asking a brother of an individual with Down Syndrome if he could remember when he realized that his brother had DS and he couldn’t. He said it was just something that he always knew. I am sure there will come a time when Jakob asks the why’s and how’s but I think I am going to let that come in its own time. Because to him, she is no different than all of his friends little sisters and because of this he will be one of her biggest fans.
Rosalie asked: How do people seem to react to her? Are they awkward around her? Do they seem fearful? Do they withdraw? How do other people’s reactions affect you?
To be honest, I wonder how many people look at her and say to themselves, “That child has Down Syndrome.” I have no way of knowing because as of yet, there is no reaction. In the nursery at church she is equal, at school she is equal, among friends, she is equal. I know that this, in time will change, but at this point, if I don’t react, other don’t either.
Anonymous said: My biggest question is how much tougher is it to raise a child with DS?
Well, to be truthful, I am the worst person to ask this to. First of all, because Ella has been blessed in so many ways, and there is nothing wrong with her. She hasn’t had bowel problems, heart surgery, tubes, glasses, thyroid problems, feeding problems, no sign of low platelets or leukemia, or any other cause for concern. This is the minority. As I say, we are VERY blessed. On top of which children with DS need intentional parenting. Routine, therapy, exercises –so do I. So we are a great fit.
There are many other stories though and if you glance at my blogroll, there are many (namely the two little girls whose buttons I display) who have not had it so easy. If you want a good cry, just click on one of those buttons and you will see why some fight a hatred for the 47th chromosome.
By the way, have ever read Ella’s story. Recently, someone said that an artist can’t properly process an event or idea until they have expressed it. My medium is words and it’s true –Ella’s story is the outpouring of my heart in a time of chaos. Enjoy.