Edda’s first day.

Yesterday was Edda’s first day back at school. We eagerly awaited the bus at 7:15 am. It was 15 minutes late – but no worries. We had Charlotte the dog on the lookout for it.

I met the driver and the bus aide and we had a wheelchair lift malfunction which took 20 min to resolve, but we did it! You see the little kid on the next lawn? That kids loves school buses and makes special morning trips to see Edda’s bus. So sweet! Last year in a stroller, this year, walking.

I think there are supposed to be five kids on the bus, but the other kids aren’t taking the bus (at least not now) so Edda has this all to herself. An enormous bus and two employees. I think Edda naps during the ride. OK, and I’m wearing my favorite pandemic sweatshirt which was a gift from a friend and I love it even though it really is a crazy thing.

And there she goes. We are grateful for her team at school. We are grateful for her after school team as well. This is Edda’s first senior year. She gets to go to school until she’s 21. I try to not think too hard about what her senior year would have been like without Rett because it’s a fantasy. I have a college classmate who worked in the Obama white house who recently posted on FB that she made one million miles on an airline and the flight crew personally thanked her for her loyalty and I wonder, could that have been me? Would I wanted that to have been me? That is a fantasy too. Sometimes I feel the two are tied, Edda’s diagnosis and my ambitions – I sometimes think that Edda’s disability allowed me to live the life I was meant to live and I’m a much, much better person. But, that’s crazy too because I would have given up all the self-awareness I gained in less than a heartbeat for Edda to not have Rett Syndrome. I would gladly reverted back to my more self-centered and less compassionate person for Edda to be applying for colleges now, haha, I wouldn’t even know what I was missing. One million airline miles and the ear of the president. I don’t know if I could have done that. Jeremy calculated it to be 150 cross-country round trip flights. If I did one trip every week, it would have taken me three years. I don’t think I would have had that in me. Now I just want to eat, read, sleep, place random games on my phone, watch the kids grow up, walk with my friends, take care of my family. I hardly ever want to travel anywhere. Which I guess is good because, you know, we are still in a pandemic even though the NYT is putting it below the fold now.

One thought on “Edda’s first day.”

  1. You know I wonder sometimes what my life would be like without Edda as well. I realize I don’t see her on a day-to-day basis. I realize I can’t communicate with her in a way that is easy but she’s had a big impact on my life in a distant, really quiet way which surprises me. I feel a great deal of love for her. I wish she didn’t have Rhett’s because I want to know what she’s thinking and feeling but that wasn’t in the cards I guess. I’ve learned so much from watching her and from watching you and Jeremy and your whole family. I think the one thing I’ve taken from my observations is that I just wish there were more people like you in the world. I’ll tell you what I am grateful for. I’m grateful for Edda and all of you because each of you, starting with Edda and on down from Jeremy, Emy, Kiki, Bob,Ben, dear sweet Vincent, your parents. All of you just make the world a better place. But Edda especially has made this world a much better place. There’s simply no denying that fact. She truly has made this earth and all the people around her better. That is an incredible legacy. Every time I read about one of her kind teachers or caregivers or the people that work with her at her camp I see kindness, I see compassion. I see hope.

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