Not a downer
Sep. 2nd, 2004 04:27 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jawnbc
All hail Brenda, Queen of the Egans! [that’s Aunt Eileen behind her. Atlantic City, Oct 2003]
Brenda (technically my aunt, but always simply Brenda. Like Cher. Or Barbra) was my Nana's "change of life" baby: child #8, daughter #5, Nana about 44 when she had her. Kids with Down's Syndrome are pretty much normal in old-fashioned Oirish broods; I remember several around Brenda's age in the neighbourhood. Didn't everyone have a mongoloid* in the family?
Brenda’s led a life that is, well, incredible. That’s in (not) credible folks. She’s been multiple times married to some of our greatest musicians: When I was little she was Cynthia, John Lennon's "real" (first) wife. Later she morphed into Annie, as in Mrs.
She’s also got into all sorts of interesting situations over the years. Once she drank about 10 of those wee airline booze bottles (my aunt Ethna worked for the airlines for years), and staggered around saying "I'm drunk! I'm drunk". We only discovered the empty bottles in her rooom the next morning--we thought she was mimicking her siblings (btw she never did it again). Brenda periodically packs all the food in the house and hides it in her bedroom ("It's for the Malibu beach house!"), including the perishables from the fridge: now that ain't cheap. And Brenda will pinch anything that's pinchable: books, jewelry, cash from pocket books, there’s bags of loot all over the house. And she loves to play the slots in Atlantic City--and the bitch even wins! You heard me--bitch!
But my favourite story is Pop! Pop! Pop! One summer, Aunt Berna had to run to the store while cooking and asked Brenda to watch a cauldron of eggs on the boil (egg salad for 40 requires a lot of eggs). Apparently Berna left the pot on a bit high: the water eventually boiled away and the eggs began to bake. Down the hall we were in our apartment when we heard several loud bangs from Berna's place. When we opened the door the room was full of acrid, sulphury smoke, with Brenda sitting quietly at the table. Smiling.
"Brenda! What happened?"
"Pop. Pop! Pop! Pop! Pop!"
Sure enough the ceiling was covered with splatters of eggs, which had apparently exploded from the direct heat. Pop Pop Pop indeed.
We ordered pizza instead. It’s hard to whip up an impromptu meal for 30. Believe me.
Folks with Down's can function at a range of intellectual levels, but the combinations are often complex. Brenda is illiterate due to severe dyslexiai. She can write rudimentary letters, but cannot make words from them or read. Ditto for numbers (dyscalcia). But she's remarkably eloquent--growing up in a family of chatterboxes might be part of why--and she loves to gab. She's also a savant with respect to meeting people: quite literally she can chat with someone for 5 minutes, and if she finds out their name, she'll remember them. Years later. I cannot tell you how often some poor cousin would come to NY after being away 20 years (since their childhood), and Brenda would say "hey Caílin, how ya doin' bubblegum?" For the record, bubblegum is roughly equivalent to the Order of Canada, and is a title to be cherished.
Brenda's sibling (6 of 7, her nearest brother Desi died about 5 years ago) dote on her, and most pitch in to keep Brenda in the centre of things. One sister is upstairs, my Da is 2 blocks away, several other sibling are within a km. My Aunt (Sister) Eileen takes Brenda up to the Mother House in Rhode Island for a week each year. Aunt Una comes over 3 or 4 times a year from Tipperary to help with things, and my Da is awesome--shopping, finances, laughter. He is the ultimate big brother to Brenda. So Brenda knows she's very loved and very important.And she still lives at home, with Nana (who’s now 97), though she still attends school 3 days week during the regular school year.
For those unfamiliar, folks with Down's Syndrome aren't saints: they're people, and they can be as mischevious as loving. And stubborn. Brenda knows that Eileen and Una are soft touches and easily manipulated. We--me, my siblings and cousins--are much less likely to buy it, however. Whenever there's a family wedding, Brenda wants to dance all night. Only with boys, specifically her nephews. There are 7 of us, but she prefers me and Tommy. Invariably Aunt Eileen is chasing Brenda around the dance floor, begging her to get in the car-but Brenda knows Eileen is like buttah in her hands: soft. Oh, she's a darn good dancer too!
But it's not all fun and laughter. When Brenda was born, most kids with Down's didn't live past their teens. Heart defects are quite common, and Brenda's got one...yet she's lived into her early 50s. One thing Nana never considered is that Brenda might outlive her--if Brenda does, it's going to be horrible for her. When Pop (Brenda's Da) died, she took it very, very badly, even with Nana still around. And Brenda's a terror in terms of making messes, marching around all night, and taking 2 hour showers. It's a lot to put up with, and the opportunity to educate Brenda out of such behaviours is long gone. So whomever would take over Nana’s role would have their hands full. And really, none of the sibling who could move in and take Nana’s place are well enough to do it: they all have advanced, poorly managed diabetes (as does Brenda). What will happen to Brenda if Nana dies is the only thing I’ve seen weigh heavily on Nana’s heart--not fun.
But we'll sort something out, if we need to. None of us could stomach putting her in an institution; that's a last resort for us Egans. It's not a rigid, cultural notion of obligation; it's the clear and obvious by-product of an extended family that believes in taking care of our own. When you love someone you do what you have to do for them; that’s a ethos I try to bring to all my loving relationships: family of origin, partner, family of choice, friends. It’s a lovely, big-hearted way to live and I recommend it.
What I need to really really really emphasize is that Brenda, like most Down's people, is so joyous, lovely, and loving most of the time. In an incredibly moving and unique way. As kids we fought over who would hug and kiss her, get to sit next to her, and she always played with us. As we got older, our perspective on her shifted (it's called growing up, eh?), but the fact that she really, really loved us--and we her--became clearer and stronger. Brenda is a person--a person with Down's Syndrome--but a person. Knowing first-hand how challenging have a Down's person in the family can be, I can understand why someone might terminate a pregnancy when Down's is detected in utero.
But I can't fathom what my life would've been like without Brenda. Nor could anyone else in the family; it's one of the few things we all agree upon: Brenda rawqs!
*Yes that was the term used back then, or “mongo” for short
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Date: 2004-09-02 05:41 am (UTC)no subject
Date: 2004-09-02 04:15 pm (UTC)no subject
Date: 2004-09-02 06:03 am (UTC)*raises a glass to you and your family*
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Date: 2004-09-02 04:17 pm (UTC)no subject
Date: 2004-09-02 06:21 am (UTC)no subject
Date: 2004-09-02 04:17 pm (UTC)no subject
Date: 2004-09-02 07:04 am (UTC)ps looks like I'll be in Sydney in March--pint?
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Date: 2004-09-02 04:18 pm (UTC)no subject
Date: 2004-09-02 10:41 pm (UTC)...will check the dates...it will be 4 day's work and then some free time!
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Date: 2004-09-03 04:58 pm (UTC)no subject
Date: 2004-09-03 09:10 pm (UTC)Thank You
Date: 2004-09-02 07:27 am (UTC)Re: Thank You
Date: 2004-09-02 04:19 pm (UTC)no subject
Date: 2004-09-02 08:06 am (UTC)no subject
Date: 2004-09-02 04:19 pm (UTC)no subject
Date: 2004-09-02 08:38 am (UTC)no subject
Date: 2004-09-02 04:20 pm (UTC)no subject
Date: 2004-09-02 06:22 pm (UTC)Fun thing today is, teaching at CUNY over 99% of my students are NYS high school graduates. NYS still offers some version of this course in the 9th grade, and the students have all forgotten its existence by the time they reach my classroom.
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Date: 2004-09-02 09:54 am (UTC)>>When you love someone you do what you have to do for them.
Yes. :-)
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Date: 2004-09-02 04:20 pm (UTC)no subject
Date: 2004-09-02 10:42 am (UTC)When my ex's grandparents died, his mentally handicapped mother came to live with us. I was surprised and disappointed that we seldom heard from the rest of the family... too afraid they might be stuck with her if they showed any interest.
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Date: 2004-09-02 04:21 pm (UTC)no subject
Date: 2004-09-02 12:09 pm (UTC)You've let us see a few moments of a remarkable life. Thanks for that!
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Date: 2004-09-02 04:22 pm (UTC)no subject
Date: 2004-09-02 11:20 pm (UTC)no subject
Date: 2004-09-03 04:59 pm (UTC)