Extras

One of the strangest things about this journey is knowing how much to disclose about Lincoln and when. When people ask if he's walking yet, and I say, "No, he has Down syndrome so he has his own time line for these things", people tend to freeze up and get out of the conversation fast. Yet, when I make a point of dancing around the issue and it comes up much later, people react as if I've been keeping something from them. The last impression I want to give is that I am withholding the information because I am ashamed of him, but at the same time, I don't want it to be the first thing I tell everyone about him because he is so much more than just a diagnosis.

When I first heard people tell me that he is a baby first and a person with Down syndrome second, I thought it was some feeble attempt to placate my fears about his future. I was so concerned with how different he was that I hovered at my DS support site everyday, wondering how all those other mothers could be so matter-of-fact about feeding tubes and children that didn't walk until two years old. But now, I understand what they all meant. At first, I tended to think of him as missing something, but now I think of him as baby plus: he has all the same needs and provides all the same joys as any baby, but he also has a few extras. He needs extra time to reach some milestones, he has extra medical and therapy appointments, and let's not forget he has a whole extra chromosome.

I am late in posting this because as I have been considering this aspect of the journey, I've been unsure how to present it. If his own mother doesn't know the appropriate way to broach the subject of his diagnosis, how can I expect family and friends (not to mention strangers) to know how to react? I guess I tend toward verbal diarrhea on the subject because I can't stand to wonder if someone is scrutinizing Lincoln and thinking, "Does he or doesn't he? Should I say something? What if I'm wrong?"

When someone who I haven't told about his diagnosis stares at his picture or is overly nice to him when we are out, I start to second guess their motives. Are they patronizing me because they can tell? Are they pitying us? Do they give him special treatment because he's "special"?

So, I go tripping over my tongue to get the truth out so they can see we are not ashamed, we are not hiding, and we certainly don't need to be pitied. The sad part is that I know this whole concern only reflects my own fears about how the world regards Lincoln. He doesn't care if the checker at the supermarket is nice to him because she recognizes his features or because she is bored out of her mind. He just wants to continue to be worshiped in the manner to which he has grown accustomed, which is constantly.