Friday, June 17, 2016
A bell's not a bell 'til you ring it
Today she rang the bell. Like millions of others who have completed cancer treatment. She rang it, she ate a glazed doughnut, and she delighted the clinic. It was a good day. She did it! We did it.
Sunday, June 5, 2016
In omnia paratus
2 years, 3 months, 3 weeks, and 1 day since diagnosis - and she is finally done.
"Big news! No chemo!" was her refrain today. There will be lots of celebrating in the days and weeks ahead. We started today with lunch with Aunt Mare and Aunt Cait and Ellie, ice cream cones, and dinner at Frank's.
I bought her a t-shirt for today. It says "In Omnia Paratus" -- which means "ready for anything." It's a reference from her second favorite TV show - Gilmore Girls. Yes, second only to Barney, Hope loves Gilmore Girls. Has watched the entire series multiple times. Knows every character. Can repeat whole scenes verbatim. It's a long story...
But here she is, 842 days later. 41% of her days on Earth later. She is ready for life without chemo.
Hoping for continued health. Hoping for few long term side effects. Hoping for happiness, adventure, joy, calm. Hoping.
"Big news! No chemo!" was her refrain today. There will be lots of celebrating in the days and weeks ahead. We started today with lunch with Aunt Mare and Aunt Cait and Ellie, ice cream cones, and dinner at Frank's.
I bought her a t-shirt for today. It says "In Omnia Paratus" -- which means "ready for anything." It's a reference from her second favorite TV show - Gilmore Girls. Yes, second only to Barney, Hope loves Gilmore Girls. Has watched the entire series multiple times. Knows every character. Can repeat whole scenes verbatim. It's a long story...
But here she is, 842 days later. 41% of her days on Earth later. She is ready for life without chemo.
Hoping for continued health. Hoping for few long term side effects. Hoping for happiness, adventure, joy, calm. Hoping.
Friday, June 3, 2016
Something old, something new
Two days left...
This week Hope had her very last Music Together class - and that means I had my last class too. Our family has been involved in these weekly music classes for kids 0-5 and their caregivers since Celia was a baby -- so going on 13 years (with a couple of years off between Quinn and Hope). It was the first activity we returned to when Hope entered maintenance and she absolutely loves it. Most of our kid song repertoire we learned from Music Together - and we have a BIG kid song repertoire. In the last year she has been large and in charge in class -- passing out the instruments and collecting them, turning off the lights for the lullaby and then shouting "WAKE UP, EVERYBODY!" when the lullaby is over.
I admit that I cried when we sang goodbye to our dear friend and teacher Susan...
This week Hope also tried something new: horseback riding. Last summer she rode a horse for the first time and loved it. It took awhile for me to get the paperwork together, including the required medical forms and neck x-ray (to make sure she doesn't have atlantoaxial instability - a condition of the cervical spine that affects perhaps 10-30% people with Down syndrome). She was finally scheduled for her riding evaluation this week - and after a long drive, she got to spend 30 minutes up on Sisi, a sweet bay, who tolerated Hope's loud commands to "STOP!" and "GO, SISI!" The therapists had her singing the whole time in an effort to get her to raise her hands and work on balancing with her core rather than clutching the saddle. She loved every minute.
******
Today is National Doughnut Day. Who knows why, or how I learned about it this morning. But it seemed as good an excuse as any to supply Hope with a glazed donut, her very favorite food and almost daily request. We had some other grocery shopping to do and the donut bought me a cooperative helper - bonus! At the self-checkout I sent Hope to the end with the bags and she was diligently shoving items into bags as fast as she could -- making sure to pack her favorite items (crackers, fruit snacks, more crackers) into one bag so she could carry her own stuff.
When I finished paying I headed down to the end to help her finish up just as an elderly couple was passing our lane. The woman smiled at Hope and said, "Training to be a bagger?"
It was one of those 'everything froze' moments for me.
I have no idea if she got a good look at Hope before she said it. If she realized that Hope has Ds. Maybe she would have made that comment to any cute 5-year-old in an orange shirt and hot pink pants being such a great helper to her mom. But in that moment it felt like a comment reflecting the woman's belief that my daughter with her visible disability will grow up and be lucky to bag groceries.
I'm having a hard time teasing apart the way this non-incident slapped me in the face. As I wheeled our wiggly cart to the car, clutching Hope's hand, I desperately wanted to call out to the old woman in the parking lot. To show her, to tell her, to explain the tangle of feelings and thoughts. I know that's kind of ridiculous -- there was nothing I could say. She didn't have malice in her heart. I'm sure of that even if in fact her meaning was 'your disabled daughter will make a great grocery store bagger someday -- with a lot of training.'
She couldn't have known that my emotions are running unusually high these days -- even for me. It's as if the surface of my skin is too aware of sensation, the smell of rain overwhelms, my kids' normal whines and gripes stab me, their giggles make me tear up.
To the extent I can unpack my own thoughts, I'd start with this: There's obviously nothing wrong with being a bagger in a grocery store - and I can imagine a future where Hope would thrive in that job. Chatting with customers, remembering regulars and their favorite purchases, being part of a team and being truly happy. It's not that my expectations for Hope are necessarily "higher" than that, or that I would be disappointed if that scenario became reality. (At this moment it is impossible to describe almost any future for and with Hope that could possibly disappoint.) It's that I don't have fully formed expectations yet and I'm not ready to limit her future to one that is so easy to envisage.
Her life unfolds. It surprises. Like that Rilke quote I love, the days ahead are "new, untouched, full of things that have never been, full of work that has never been done." We are preparing to turn a new page and what she will compose on the coming pages remains to be seen. We are a tangle of every emotion as we await that future.
I admit that I cried when we sang goodbye to our dear friend and teacher Susan...
This week Hope also tried something new: horseback riding. Last summer she rode a horse for the first time and loved it. It took awhile for me to get the paperwork together, including the required medical forms and neck x-ray (to make sure she doesn't have atlantoaxial instability - a condition of the cervical spine that affects perhaps 10-30% people with Down syndrome). She was finally scheduled for her riding evaluation this week - and after a long drive, she got to spend 30 minutes up on Sisi, a sweet bay, who tolerated Hope's loud commands to "STOP!" and "GO, SISI!" The therapists had her singing the whole time in an effort to get her to raise her hands and work on balancing with her core rather than clutching the saddle. She loved every minute.
******
Today is National Doughnut Day. Who knows why, or how I learned about it this morning. But it seemed as good an excuse as any to supply Hope with a glazed donut, her very favorite food and almost daily request. We had some other grocery shopping to do and the donut bought me a cooperative helper - bonus! At the self-checkout I sent Hope to the end with the bags and she was diligently shoving items into bags as fast as she could -- making sure to pack her favorite items (crackers, fruit snacks, more crackers) into one bag so she could carry her own stuff.
When I finished paying I headed down to the end to help her finish up just as an elderly couple was passing our lane. The woman smiled at Hope and said, "Training to be a bagger?"
It was one of those 'everything froze' moments for me.
I have no idea if she got a good look at Hope before she said it. If she realized that Hope has Ds. Maybe she would have made that comment to any cute 5-year-old in an orange shirt and hot pink pants being such a great helper to her mom. But in that moment it felt like a comment reflecting the woman's belief that my daughter with her visible disability will grow up and be lucky to bag groceries.
I'm having a hard time teasing apart the way this non-incident slapped me in the face. As I wheeled our wiggly cart to the car, clutching Hope's hand, I desperately wanted to call out to the old woman in the parking lot. To show her, to tell her, to explain the tangle of feelings and thoughts. I know that's kind of ridiculous -- there was nothing I could say. She didn't have malice in her heart. I'm sure of that even if in fact her meaning was 'your disabled daughter will make a great grocery store bagger someday -- with a lot of training.'
She couldn't have known that my emotions are running unusually high these days -- even for me. It's as if the surface of my skin is too aware of sensation, the smell of rain overwhelms, my kids' normal whines and gripes stab me, their giggles make me tear up.
To the extent I can unpack my own thoughts, I'd start with this: There's obviously nothing wrong with being a bagger in a grocery store - and I can imagine a future where Hope would thrive in that job. Chatting with customers, remembering regulars and their favorite purchases, being part of a team and being truly happy. It's not that my expectations for Hope are necessarily "higher" than that, or that I would be disappointed if that scenario became reality. (At this moment it is impossible to describe almost any future for and with Hope that could possibly disappoint.) It's that I don't have fully formed expectations yet and I'm not ready to limit her future to one that is so easy to envisage.
Her life unfolds. It surprises. Like that Rilke quote I love, the days ahead are "new, untouched, full of things that have never been, full of work that has never been done." We are preparing to turn a new page and what she will compose on the coming pages remains to be seen. We are a tangle of every emotion as we await that future.
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