This came home from school yesterday. 100% imagined by Lily.
This came home from school yesterday. 100% imagined by Lily.
Tomorrow is D-day. The day four years ago when we got Lily’s Rett diagnosis. I remember it like that recurring bad dream that you just can’t shake. The worst dream – actually – you could imagine having about your child. Unfortunately it was our reality. It is still our reality.
I naively thought/hoped that by now, there’d be a cure. No one made me that promise, but it was a piece of hope that I held onto as the science – even four years ago – seemed so promising.
Today, four years in, I’m living in that in-between space. I can’t have too much hope nor can I have too much despair. Every few weeks I hear positive news about how much closer we are to a cure. Every few days I hear about another Rett girl dying. So I try to walk around with blinders – shutting out the hope and the despair, living in the now. And some days, this trick actually works.
But enough about me. How is this impacting Lily? She will be seven years old in a few weeks. Cognitively she’s all there. But her body is at war against her. And this is taking its toll. I see it in her eyes – she has SO MUCH she wants to tell me. She has SO MUCH to say. And she is SO FRUSTRATED. I’m grateful for the Tobii and her therapists – because of them we have a window into her thoughts. But this is a very high-level window. We know how she feels, how she’d like her hair to look, how much she knows about the weather and the date and the time and the book that she’s reading. We know that she has a very silly sense of humor. Trying to have an in-depth two-way conversation with her, however, proves to be elusive. ‘Lily, WHY are you sad?’ ‘Lily, WHAT exactly hurts right now?’ ‘Lily WHY do you keep talking about monsters?’ These are some of the questions that just can’t be answered. At least not yet.
Lily desperately wants to be a ballerina. But there are some mornings when she can barely keep her feet under her. She desperately wants to play with other kids. But only once – yes ONCE – in almost seven years have I seen neurotypical kids look to actively engage with her. Once. It was at my aunt’s birthday party last year and these sweet kids (who were complete strangers about Lily’s age) came over and asked to play ‘Rock, Paper, Scissors’ with her. Even though I had to do hand-over-hand and we lost terribly (I still don’t fully understand those rules), she had the best time ever. I cried. They were mostly happy tears.
I tell her every day that she can do whatever she sets her mind to. I tell her every day that she is the bravest, hardest working, smartest, silliest, prettiest almost 7 year old that I know. That second sentence is truth. The first sentence I desperately want to be true. I am basically willing it into existence.
My ask to you is this: if you were thinking of getting Lily a birthday present, the best present you can give right now would be to make a donation to Lily’s fundraising page for the Rett Syndrome Research Trust. I don’t care if it’s $5 or $5000. Help me will her cure into existence. The science is so promising. And if I take my blinders off for a moment and try to bask in the hope, I’m pretty sure that by the time she’s 10, there will be a cure.
Yesterday morning while having breakfast, Lily told me that she wanted to look at baby animals – birds, cats, guinea pigs and dogs. So I pulled up some YouTube videos and we had fun watching these furry little creatures move around. She was especially fond of the kittens and birds. She eventually told me that she wants a pet kitten and a pet bird. I wasn’t surprised to hear that she wanted a bird. Last week, she fell asleep in school and was giggling in her sleep. When her teacher asked what it was she was giggling about, she said she was dreaming of having a pet bird!!!
Some of you may remember that we experimented with a pet cat back when we lived in Greenpoint, Brooklyn. Quelle disastre.
This mommy can’t take on any more responsibilities so instead of getting her a pet bird or pet cat, we will be taking her (often) to the pet store to visit her animal friends there.
Even though our mornings start with me saying “Lily – breathe” “Scoot forward angel face” “Stand up – you can do it!” “Keep your feet under you baby girl” “Walk forward” “Lily relax your muscles” “Lily open your mouth sweetie” “Swallow your food honey” “Lily you need to eat something before going to school”, they are also filled with so much love and many giggles.
Her struggles continue. Some of her symptoms are getting worse. Some are easing up. But she still manages to put a smile on her face and bravely move forward with her day. I do my best to follow suit.
I’m grateful that this girl continues to persevere in the face of so much adversity. A lesser person would crumble. I’ve crumbled. But I dust myself off and remember that Lily needs me. I do not have the luxury of losing my shit completely. Though I do lose it momentarily, and preferably when she’s not around.
I am her voice (though she’s getting quite fluent with the Tobii), I am her arms, sometimes her legs, oftentimes her nurse, her doctor and always her advocate. Oh yes, and I’m her mommy. So we do our best to have as much fun as possible in between (and sometimes during) all those doctors and hospital appointments.
It’s the season of giving. And my ask to you is this: if you are considering making a charitable donation in the coming weeks, please consider giving to the Rett Syndrome Research Trust. We are SO very close to a cure; every dollar raised inches us to our goal. And all of our Rett sweeties and their families could use a miracle right about now.
C & L
The other day I rushed home from work because I was so curious as to WHO she wrote her first independent letter to. And then my heart just melted.
How cool is this kid? She navigated through her pages completely independently and not only did she tell me a silly joke, but she told me she was happy! Goodness I love her so much.
The next day, she wasn’t feeling so well. She had a stomachache (which is unfortunately a frequent occurrence even though I do my best to stay on top of her digestive issues) and didn’t have a lot of energy at school. But still. This kid wanted to write another letter. And this one was addressed to…
My heart is bursting with pride. Sharing a note Lily’s teacher wrote today along with some pictures…
This kiddo had an amazing day! She’s been very interested in notes and letters (wanting to keep re-reading the notes you send in her lunchbox, very proud of the card she wrote for Christine’s birthday, etc). So yesterday and today we started talking more about letters. We talked about parts of a letter (greeting, body, closing) and Lily helped me sequence a letter that I wrote to Ms. Ariel. She was very into the activity (wanted it to be a secret and a surprise, and asked for “more” when the activity was complete). Then, she worked on her own letter. Christine, we sent it home in her backpack. We were blown away… she wrote it almost completely by herself, with nothing but some verbal prompts (e.g. “don’t forget, a greeting is like a hello…”). She chose who the letter was for, what she wanted to say, and how she wanted to close out the letter. It was really great practice (writing work and using the Tobii), so I’m sure you’ll be seeing more letters in the upcoming weeks.
Today we also read a few more chapters of Junie B Jones and she was laughing hysterically at the silly parts. In one of the chapters, Junie is sharpening pencils (and attempts to sharpen a crayon in a pencil sharpener, which doesn’t go so well). Lily requested, “my turn,” so I took her to the office to sharpen a pencil. She seemed to think it was great fun! She once again did a fabulous job asking comprehension questions during the read aloud, and seemed very engaged. Once again, she was a total cuddle bunny today. At the end of the day, she kept going back and forth between me and Ariel, squealing, and leaning in for hugs. She also put her arm around each of us at least once, which was so exciting! She was very, very happy this afternoon.
See you soon,
P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!
A few weeks ago, Lily lost a tooth and got $5 from the tooth fairy. She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch! You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition. A watch is the perfect accompaniment to this activity, no? She’s so proud of this orange watch.
Earlier today, I got this text from Elaine and it made my heart burst with pride:
It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii… it was so exciting to see!
We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!