Day one of x???

Wild times. Unprecedented times. For everyone.

And I hope you are all taking the necessary precautions. We are. Yesterday we drove up to our house in Connecticut packed with food, clothes, books, computers. Spent the day settling in. It is truly beautiful up here. And to be able to go out, smell the fresh air and see nothing but nature, that is a real gift.

These photos from yesterday depict one of joy and calm. And during some parts of the day, it was true. For others, not so much. Lily really misses school and her friends. I miss going to work, as does Stephen. We were trying to juggle it all yesterday, and without any support. It did not all run smoothly.

I have two immediate concerns – the first is that it has been years since I’ve not had daily support for Lily. She needs a lot of supervision and guidance. She can’t run around unaccompanied or sit there and play with her dolls, or play a game on her iPad or whatever it is that typical 9 year olds do. The other is also related to Lily. It’s been years since she’s not had intensive, consistent therapy. In a typical week she has at least 20 hours of direct treatment – occupational therapy, physical therapy, speech, etc…

To sum it up: I’m most worried about my capacity to care for her WHILE ensuring that she maintains the skills she currently has. And working full time.

Thankfully we’ve got Stephen. We are very lucky girls. And I know that he and I will create a new norm – one that will work for us all. It is not going to be easy. Nor will it always go well. But together we will do our best.

Oh, and then there’s this whole pandemic thing. Health risks, massive disruptions to the community. As someone who has spent the last 8 years living in a state of near-constant panic, who has fought for basic rights, who knows that each day can bring a terribly scary turn of events, I’m empathetic to everyone who is now dealing with these feelings. It is not fun.

But we will get through it.

Sending health and peace of mind and abundance to you all.

Love,

C & L & S

Highlights from a very interesting day in the country…

Fearless

Hanging out at mom’s office in midtown Manhattan after a harrowing experience.

Lily’s fearlessness is something I always intuitively recognized, but it came to the forefront a few weeks back when I was packing up the taxi to take her to my office for the day.  Her hand slipped from my grip for a split second and she darted out into the middle of Amsterdam Avenue as the stoplight was just about to turn green.  I was able to grab her before anything bad happened but I was completely rattled.  She, on the other hand, was not.

Maybe fearless isn’t the right term – it’s more of a lack of understanding of consequences when engaging in certain activities.  Lily is learning to read and write and do math and all the other things that a typical 7-year old would be learning in school.  She’s really smart.  But there’s this missing filter that I find to be quite baffling.

When I’m baffled by something, I turn to research, which includes reaching out to other Rett parents to hear their experiences.  Turns out that this missing fear filter is all too common for ambulatory Rett girls.  I received over 40 comments on the Rett family support group from parents telling me stories of their ambulatory kiddos darting off in the middle of busy airports or fleeing playgrounds or even worse.

Fearlessness isn’t necessarily something that would spring to mind when thinking of a child with Rett Syndrome, is it?  But from what I’ve experienced – and heard from other parents – this is a Rett symptom that is VERY REAL.  I’ve not read about it in any literature or in any research papers.  There are so many other crazy symptoms to keep an eye out for, this is one that’s just been overlooked.

So how am I managing this?  Well, other than taking a healthy dose of Xanax to calm my nerves,  I’ve spoken to school about my concerns and they are adding goals to her IEP about helping her better understand dangerous activities and why she should not be engaging in them.

Also, we’ve found an outlet for her fearlessness: rock climbing!  For the past two weeks Lily’s dad has taken her to Brooklyn Boulders, an indoor rock climbing gym, where she scales the walls.  Literally!  Yesterday this kid rang the bell twice, which in rock-climbing lingo means she climbed to the tippy top of the wall.

On one hand, I’m eternally grateful that I have a child with Rett Syndrome who rock climbs fearlessly.  I know too many Rett moms who would be overjoyed with seeing their sweetie take a few steps.  So I don’t take my child’s abilities lightly.  However, managing her lack of a fear filter – especially as she gets older – is something that her nannies, therapists, teachers, relatives, friends and parents will ALL have to stay on top of.  So, I thank you all in advance for helping us navigate this dangerous and little known Rett symptom.

With love and gratitude,

C & L

       Rock climbing with her dad in Brooklyn!

 

Stir crazy

Yeah… we bad. We bad.

Actually, we bored!

Lily is ready to get back to school. She’s been sobbing intermittently for the past few days. Likely because she’s been cooped up and is missing her friends.  Or maybe today it’s because she’s not peed in over 18 hours.  There’s a lot of calculated guessing when it comes to figuring out what’s going on with her.

Anyway, it was pretty apparent when she came home to me yesterday evening that she wanted to go outside.

This is how she tells me she wants to go out… she stares at the doorknob wishing it to open

But as it’s currently hovering around 15 degrees Fahrenheit and she has zero body fat, there was no chance that we were going to venture out in the dark last night.

So today I planned a day of activity and fun! The American Museum of Natural History followed by lunch at her favorite restaurant Playa Betty’s.

Our first 20 or so minutes at the museum were tense. She was not pleased. But we finally made our way to the Native American section which she loves; she eventually perked up – her favorite music, Snapchat filters and bead displays helped. Lily spent about an hour roaming about looking at furs and feathers while I played bodyguard, blocking her from other museum patrons.

So the museum was mostly good, though exhausting as I had to carry her for much of it. And the other half was spent chasing after her.

Next on our agenda – lunch! The restaurant was 4 short blocks from the museum so I decided that we should walk. I mean… she was busting to get outside last night, right? Well it turns out that Lily likes the cold and snow even less than me. After about a half a block of walking/carrying, she burst into tears. Thankfully a taxi driver took pity on us and took us three(!) blocks to our restaurant. He was very kind and laughed along with me at my kids over-reaction to the snow.

Thankfully she ate her lunch – in between sobs – and I got mine packed to go. We braved the short block and a half to our home – amidst the sobs – and now we are home. And it’s only 2pm.  And she’s still not peed.

Wish us luck.

This is what she currently thinks of winter break.

Writing letters part 2

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.

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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…

Writing letters

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,

Ellie

P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!

Back to Work, Back to School

Both Lily and I transitioned easily back into our routines. I returned to work with a clear head about the direction we were/likely are going in with the feeding tube. Of course my kid upended it all by devouring most everything in her sight after the appointment with her pediatric GI (who recommended a small feeding tube). So for now, the decision is still somewhat up in the air. She’s still eating well. But I’ve done my research, I’ve written out the pros/cons and I’m as comfortable as can be about this situation.

Which is a good thing as it’s been a crazy few weeks at the office. Thankfully my team held things together while I was out. Actually they did more than hold things together – they did a phenomenal job managing some really complex projects that arose during my absence. And the projects have kept piling up since my return. Currently my team is running multiple community fundraisers and assistance programs for employees who have been severely impacted by these recent disasters (the company I work for operates in over 100 countries and 500 cities). Additionally we hosted Cherie Blair (former Prime Minister Tony Blair’s wife and kick-ass advocate for women’s rights) for a conversation and cocktails the day after the earthquake in Mexico. It’s been both a a sad and inspirational time at work. So much devastation but also so much support for our employees (which my team and I are managing). And to top it off, a cool panel session with some awesome ladies.

As for Lily – she continues to have her ups and downs. But is loving school and her therapies. I’m getting notes from her teachers and therapists that she is blowing them away. I’m so proud of this hard-working kid.

From top to bottom:

  1. Mom working hard
  2. Lily letting me know what she thinks about Rett Syndrome on a bad day
  3. Excited about the first day of first grade!

Tellin’ time

orange watchA 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!