Wednesday, April 29, 2009


Just a few reflections on the day...

* I know full well that my mother's issues are just that - HER issues. But it is so exhausting to deal with them.

* I think I still live in a bit of a fairytale bubble when it comes to Sofia. I am incredibly lucky to be surrounded by so much positive energy, but I forget that this is not the norm. That she is still considered "other" by most of the world. Even by members of my family. And that, to some degree, she really IS a bit "other".

I remember thinking, when I first got our amnio results, that the extra chromosome actually makes her something totally different, totally other.

I don't know where that puts me. She's still my daughter, she's still amazing, and I'm going to continue to push for her to be able to do everything. But I have to remember that not everyone "gets" that.

* I was terribly saddened to hear today about the passing of Su H. A former member of my shul, Su and her family moved to Germany last summer for her husband's work. The oldest of their three boys was Sam's friend.

Su suffered from mental illness, and as a result, she passed away yesterday (no, I don't want to repeat the whole story. Suffice it to say it is upsetting).

I feel dreadful for those three boys.

I feel so sad for her husband, losing his love and having to pick up the shattered pieces of their family.

I weep for some of my friends who were really close to her. Not only have they lost a very dear friend, but they were separated by an ocean for the past so many months, feeling helpless to do anything for her.

But I feel incredibly proud of my Samuel. I told him briefly this evening, because it is likely that he will hear about it in shul this weekend. He recognized right away that his friend would need extra support. Sam's empathy just amazed me. He was thoughtful. He asked questions and made comments that were almost totally related to people's feelings.

When Sammy first started talking, his big question was "Why?". He must have asked "Why" a thousand times a day.

When Micah finally started talking, his question was "How?". I was always struck by the difference between the two questions, and what they said about the difference between the two little personalities.

I don't have much more to say now. Just random thoughts.


Tracy said...

I love to read your posts. You really make me think about how our little ones might be viewed from the outside. It is hard for us to think of our children as "other" because we have actually realized that all of or children are "other" in their own way. Yes, Down syndrome is a little bit more "other" but it just makes the journey a little more interesting, I think. More challenging.....but interesting. I wish your mother could see that.