Errol’s had lots of loving names throughout his eleven months with us. At the hospital (where he spent much of his first half year) Errol nomenclature followed along class lines. The doctors called him Errol, his nurses, Earl, and the nurse assistants just called him Taterbug. We’ve run through a number of nicknames for him, ourselves. He’s been, at various times, Errol, Earl, Early Bird, Birdie, The Duke of Earl, The Little Man (he’ll always be little in many ways), Little Man, The Little Mammal (he is, and so are you), Mammal!, The Milky Man, The Milker, and, most recently, the Snapper (don’t ask).
Apart from his sobriquets, we’ve always been unsure of what to call his condition.
Is he mentally handicapped, retarded, cognitively delayed, disabled, or what?
He is all those things, and more, but it’s hard to decide which of these names to take on for him. Retarded brings a lot of baggage with it, none of it positive. Handicapped sounds good, but it’s etymology is not so shiny. Apparently, in the not so distant past, people who were mentally or physically disabled earned their keep by holding their cap in their hand (handicapped) to collect alms. We’ve come a long way since those days, and I don’t know if I want the word to join us in the more humane present. Errol is delayed, but that’s really an understatement (a plane that’s thirty minutes late is delayed. Errol, more likely, has missed the flight). Disabled may be the best description with the least negative connotations.
For now, most people don’t ask about such a cute little baby, “What on earth is wrong with your baby?” Then again, I don’t know if they’ll ever ask at all. Either way, Errol certainly won’t be a baby forever (or at least not physically) so we probably need to have a preferred term ready to describe the little fellow. Of course, the best way to describe Errol is by describing Errol. Rubinstein-Taybi Syndrome, Pulmonary atresia with a hypoplastic right ventricle, visual impairment (the list goes on), crooked feet (another story), little head, sweet as a button. But who has time for a long story, and there will be plenty of times we’ll need to sum him up in a term: sweet? We’ll probably just try some terms out and see what works best. Any suggestions would be most helpful. For now, we’ll just call him Earl.
2 comments:
Jonathan, as you said, too many different attackers, wildly attacked Errol.
I strongly hope he'll find enough strength and fight back!
Dear Erroll,
I've got a little secret for you. We're all in this ole' world together, all of us challenged. Some of us have mental challenges. Some of us have physical challenges. Some of us have emotional challenges. But we all have challenges. To say that one of us has more challenges than the other is true, in one way. But in actuality, we are all challenged just because we're human.
We're all just as important as the other. We all have important contributions to make, just like everyone else. We're not the same, but we're equal. Who's to say that your contributions are less than mine, just because I don't have the challenges you have? Who's to say I'm not as good as you, just because I'm not as sweet and nice as you?
We're not supposed to compare ourselves with other people. We're all just people.
So, in response to your mama and daddy's wondering what label to put on you, I say NO LABELS. People have to accept you for who you are, little brother. And as far as I can see, YOU SHINE. That is more than many people can claim, in a lifetime. So Shine On, Little Man. Shine On. Maybe the rest of us can learn something from you.
We each are so afraid to shine for ourselves. Sometimes we need shiners in our lives to bring that out in us.
Anyway, off the subject - I believe if one has to give a label, it could have the word "challenge" in it. People have a natural curiosity, or a natural nosiness, or a natural preoccupation with people who are "different." (That's because they aren't settled with who they are, but you can't do anything about that.) You can't satisfy other people, you can only satisfy yourselves. Perhaps you could say something like, "This is our son, Errol. He has some challenges (if they ask), and we are so blessed that he is in our lives." Leave it at that.
When Natalya was in the hospital when she was 2 weeks old, the neonatologist called her "peanut." She was really tiny. She had lots of names, but the funniest one was one David called her: "Zeus." My father heard him once and said, "Did you just call her Zeus?!"
I think this label thing is one you all will just have to work through as you have this experience.
Much love,
Marigene
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