If I Had Seen It Coming

I gnawed on something that happened today to the point that finally I was infuriated.  Clara had two doctor appointments this morning, and I'm happy to report that her platelet levels are still climbing (98,000!  We're getting there!) and her ASD in her heart is non-threatening--though it's medium size and if it doesn't close on it's own we will likely be looking at surgery in two years.  And of course, none of the previous is what infuriated me.

Let me start by saying I don't ever want to become one of those parents who are jaded by the experiences of having a child with a disability.  As an example, some have taken offense to recent stories (a homecoming queen and a team manager are recent news events) featuring people taking action to do positive things (or what they perceive to be positive--I guess that part is up for debate) for children with Down syndrome.  These parents are insulted because their interpretation is that the story is about the do-gooder and not the child, and the child is simply being used.

It is my opinion that anything generating positive buzz for our children is welcome; and by me it is received with nothing but hope--hope that the acceptance and kindness become the norm rather than newsworthy.  As for the jaded parents, I fear that their voices will scare the potential future of acceptance further from our grasp.  Who wants to be chided for doing what they believe is good?

Perhaps the jaded parents are just overly sensitive.  Perhaps I am getting dangerously close to being there as well.  Our negative experiences start to add up, causing us to lose hope and to feel isolated.

You never see it coming when it slams into you.  It happened to me at our first appointment this morning, with the cardiologist.

Everything was going fine.  Clara was good during her echo-cardiogram (though her brother was a different story), remaining relaxed and sleeping through the procedure. Then she had her EKG, which pissed her off but passed quickly enough.

Before the doctor came in to summarize her findings I was interviewed on Clara's medical history by another one of the staff.  She asked a series of normal questions regarding family history, Clara's medical history and allergies, and finally she wanted to know why an echo had been performed right after her birth.  Expecting that she knew, I stated:  "I assume because she has Down syndrome."  The interviewer stopped writing for a moment.  It was then that it dawned on me that they hadn't been passed this information from the pediatrician, or if they had they failed to retain it.

The cardiologist immediately struck me as cocky, getting right up on me to ask her first questions as she peered down at Clara in my arms.  Her questions were mainly aimed at understanding the perinatologist's findings.  Then she asked me: "So did you know she was going to have Down syndrome before she was born?"

That was the question that I stewed on.  What did that have to do with where we were now?  She may as well have said, "Too bad you didn't catch the Down syndrome before she was born."  Something in her tone implied anyone would have terminated the pregnancy.

I didn't get sassy, but if I could live that moment over I would have a well-crafted and nasty lesson about a mother's love for her.  I've decided that I'm going to ask the pediatrician to refer me to a different cardiologist for our follow-ups on her ASD.  This is like the perinatologist experience all over again.  After today, and with all the doctors I've met in the last few months, I feel I can say with a reasonable amount of expertise in the matter that 1 in 3 has lost touch with humanity.

Part of me knows I could have totally misinterpreted her intention.  But the rest of me knows I didn't.

Does my anger over a simple question make me jaded?  Am I becoming what my innocent and inexperienced self kept saying she would never be?

Half of me thinks my reaction is reasonable.  It's the other half that is here questioning.