One of the things I have found myself tripping over the last few months is how to talk about Hope. For instance, Hope overheats very easily and seems to have difficulty cooling down. From a little bit of the reading we’ve done this seems to be typical of PWS. So do I say “Hope overheats easily” or “PWS causes Hope to overheat.” Does it matter? Is it just a matter of semantics? Is it denial? Maybe I’m afraid to talk about Hope and PWS in the same sentence, of course it doesn’t change the reality of anything.
One word I’ve definitely left behind is “normal.” At first, people talked about finding “the new normal” — but I have come to regard that as a myth. For one thing “normal” seems to connote predictability and our life is anything but predictable right now. Secondly, we’ve learned that in the language of genetics there is no such thing as “normal” — everything is a “range.” There is a range of abilities, a range of severity, a range of this or that symptom. Finally, there is the inevitable comparison between Hope and “normal” kids — for example, persons with PWS require fewer calories than “normal.” In this vernacular, Hope will often be considered “abnormal” and in this world that is usually considered defective.
I resent the idea that there is something wrong with my daughter. It really pisses me off. One of the first phone calls I got when I came home from the hospital was from St. Agnes doing some kind of follow-up about my stay. The person on the other end of the phone asked how my child with the genetic defect was doing. I wanted to climb through the phone and sock that woman upside the head.
On the other hand I have to accept that Hope is different and I have entered a different world. I’m uncomfortable with and afraid of the new language, culture, and people I’m now expected to move among. And it’s not like I’m just visiting this place, we live here now — heck, we’re natives!
There is a grieving process involved in having a child with special needs and as I write this I have to admit I’m stuck in anger and denial. Specifically, denial about the fact that I’m angry. It feels terribly ungrateful to be angry about having a child as sweet and precious as Hope. But there it is, and I wish I could be so noble as to say that it’s not for me that I’m angry, that it’s only for Hope’s sake. But the truth is I don’t want either of us to be different.
So I guess I’ve got some work to do.