Author: Doris

Out of the handful of Rett Syndrome charities out there, I like RSRT the best simply because their financials are pretty transparent and they spend the overwheming bulk of their money on medical research. So I feel like when I ask my friends to donate their $ on behalf of Edda, that their money is going straight to a lab full of pipettes and test tubes and Sharpies and DNA polymerase – all things I like and am familiar with.

RSRT recently put together this video for one of their largest fundraisers. It mentions that all Rett girls are smart and clever and trapped in their uncooperative bodies. That they all have something to say and we need to find a cure in order to release them.

I think that the gene mutation for Rett Syndrome impairs a fundamental function in all  of the neurons in Edda’s brain – that her cognition (her “smartness” or her “cleverness”) is actually very low.  It’s not to say that she should not be a valued member of the community – that she is not worthy of our love, attention or committment as a society.  It does not mean that she is any less than the rest of us.  Frankly, if if was so important to be smart or clever, I think most of us would be standing on the wrong side of the line of the ground because aren’t we just all bumbling around making mistakes and doing stupid and silly things all the time?  (Well, maybe just me.)

And I sometimes think that I’m the only Rett parent who is relieved and hopes that Edda doesn’t understand how much she’s missing out on – that she’s happy with her very limited and circumscribed life and not pining for all the things that she’s missing out on – true, deep friendships full of secrets and and gossip – running through a field in the bright, fall sun chasing golden leaves – finding a secret hiding place on her own where she can read a book for hours at a time with a bag of M&Ms – and dancing and dancing – and taking a biology class with a really great teacher, like so many great science teachers I’ve had, and learning about evolution and gene mutation and meiosis where the whole trouble with the missing guanine began!

Nothing like after a long day at work to go to my parents house for a great home cooked meal (delicious!) and a 45 minute lively discussion on Obamacare. Oh how my dad enjoys nothing better than to engage Jeremy in a head-to-head discussion while I cringe and go looking for some ice cream. Tonight was better than usual – they agreed on some points – and everyone stayed in a good mood.  Maybe it was because the pork was so yummy.

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Look at Jeremy’s awesome sweater.  Brooks Brothers!  8 dollars from the thrift shop.  Poppin’ tags!  Jeremy thought it was a little loud for everyday wear.

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This is a day for outfits – out of my usual tee shirt and chinos into a dress and heels.  Inspired Vince enough (he was home sick today) to take a quick photo.

This was a banner day for getting stuff done before 8:30 am.  I’m still struggling with insomnia – I’ve cleared out a lot of what I think was causing it, but still I wake with a start at 3 or 4 am everyday and then it’s hard to go back to sleep.  I don’t seem tired during the day, so maybe now I only need 6 hours of sleep everyday.   Since I’m up, I usually take Edda duty, which after 7 or 8 years of alternating nights tending to her, Jeremy is luxuriating in a long string of sleeping through the night which he greatly appreciates.

So at 4 am, I’m with Edda in her bed and she launches into her triweekly (once every three weeks or so – not three times a week) Rett episode where she shakes and shivers and breath holds and has jerky movements which I refuse to call a seizure because how can we not medicate these episodes if they are actually seizures?  And also, who has every heard of a seizure lasting for an hour? I hold her and sing to her – I need to learn more lyrics to songs, not just the choruses.  So this episode lasts for an hour and we both fall asleep at 5 am for another hour.  I count this as the first thing I’ve checked off my to-do list for the day.

By 7 am, I have made final edits to a PowerPoint presentation due at 10 am and printed 8 copies of it all to distribute.  Then I indulge Vince in a ride to school because it’s so cold outside and notice that the BRAKE warning light is on and off in rhythm to the turns I’m making with the car.  So I wonder if that means that the brakes are going to fail on me right then and there with the two of us in the car.  So then I drive to the auto repair shop and buy a can of brake fluid ($3.29) and top it off at 7:45 am in the parking lot.  The BRAKE light is fixed.  I’m feeling very pleased with myself that I’ve repaired the car for less than 10 dollars.

Drive back home in my perfectly running car and take the dogs for a walk in the woods.  Get back by 8:30 am.

What happened the rest of the day?  Nothing much.  And then the day is over.

Do you know how to become the most uninteresting person? Tell your best friend the mile-by-mile account of the half-marathon you ran on Sunday.  I think, in the past, she has patiently listened to me  talk about how to stop the dogs from puking, how to put up baby gates in the kitchen, how to decide what shoes to wear and how to pick the perfect paint out from Home Depot (all of these conversations must have lasted at least 20 minutes, perhaps maybe even up to 45 minutes per conversation).  By the time I got to mile 8 of the half marathon she declared – OK Doris, I’m really happy for you, but I’m not the right person to talk to about this.  It’s so boring and I have no idea what you are talking about.  I just had to laugh and say OK, OK, I’m done telling you, but I haven’t yet gotten to the best part!  But if you insist, let’s talk about something else.