Tag Archives: Tobii

Double Digits

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This kid is going to be 10 in a few days.


In these 10 years, she’s beaten so many odds. She’s doing well. But there are still so many things that she can’t do.


I often think about the conversations we would be having if she could talk. I have them with her regardless, searching her face for answers. But what about the conversations she wants to have? The Tobii is great but it is so very limiting. This child has complex thoughts and feelings. I can see it in her eyes. And those thoughts mostly stay trapped in that amazing brain of hers.


And when I say that Lily is doing well, it’s not like when typical kids are doing well. Doing well for her means that she’s not having significant breathing problems, she’s sleeping (albeit with medication), that she’s still able to walk independently, hasn’t been to the ER in a while and is capable of swallowing food. She still needs 24/7 support as she’s unsteady on her feet, her hands don’t function and she’s nonverbal.


And nothing is linear. Not her growth chart. Not her capabilities. Some days her ability to swallow food gets so compromised that we have to purée her meals.


But there’s good news too. She’s getting taller, she’s gained some weight (over 5 pounds this year alone) and she’s progressing academically (even in a fully remote environment). She also continues to be super cool, super funny and silly and super optimistic.


I say to her every day ‘how did I get so lucky to be your mom? To have such a sweet, smart, tenacious kid!’ I am so proud to call her my daughter. Everyone who knows her will tell you that she exudes love and sunshine and acceptance.
And she’s busting to see all of you in person — to give giggly hugs and have dance parties and make you read her books.


Hopefully we will get the opportunity to see you at some point this year. I’ll try to send more updates through www.blueberriesandgiggles.com as I’ve been off social media for a few months.


But for now, we celebrate a decade of Lily. Ten years have flown by and I want to make damn sure that the next ten are superior to the last.
I wish I could give you a list of things Lily would like for her birthday, but she’s gotten most of the tangible things for Christmas (which was less than two months ago). If you feel compelled to give something, please donate to Rett Syndrome Research Trust as the best gift this kid could get would be a cure. The second best would be something palliative to mitigate her symptoms. Both are being researched right now.


Sending love and health (both physical and mental) to you all.


C

Winter wonderland
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Better and different

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Last Friday was a pretty big day for us girls. You already caught a glimpse of Wonder Woman and heard that she was having a tough morning. But so many other things happened on Friday.  Even though this kid was feeling like crap in the a.m., she still made it to a dentist appointment.  She was brave, but man she hates going to the dentist.  Who doesn’t?

Then it was to school for super hero day, then PT and afterwards, I took her for a haircut.

She’s been wanting, and needing one for some time. And a few weeks back we had an appointment, but that was the day Lily fell at school and had to get 4 staples to hold her scalp together. Oh, that was a fun day indeed. However, I digress…

As many of you may know her hair is quite a topic of interest. We have had many conversations and even more debates about what she wants to do with it. For a while we were creating a weekly hair menu where she would plot out every hairstyle for each day of the week (see below).

But the debates about her haircut were always the most interesting. She would tell me, incessantly, that she wants bangs and short hair. To which I would reply, ‘short hair in the summer isn’t a great idea’ and wax on as to why. Her response was always quite diplomatic, ‘I can see your point’ she would navigate to on her Tobii (completely independently I must add); not that she agreed with me, but that she understood my reasons why.

In the end, she won. Mainly because the person cutting her hair cut it much shorter than was discussed. But Lily has been so pleased with the result.  She told her teacher yesterday that her hair is ‘better and different’. Why yes it is, smart, sweet, stylish child of mine.

Lily’s luau birthday bash

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This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. In anticipation of her upcoming Make-A-Wish trip to Hawaii, we celebrated with a luau!

The party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position in the second set of photos) and then the luau at school with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan, followed by dinner at her favorite restaurant. And then we went home, exhausted, full and happy.

Today

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It’s 5:30pm on the 24th of January. And it just hit me. Today marks 5 years since d-day–Lily’s Rett diagnosis day.

What a 5 years it’s been. What a roller-coaster. But I wouldn’t give it up for anything. I’ve got the sweetest, coolest almost 8 year old I know. She is my joy, my inspiration.

Don’t get me wrong, it’s not easy. Every day I say to her when she’s having a tough moment–like trying to walk in the morning or crying uncontrollably in the middle of the night–that I can’t fix things. But that I can make them better. With love and comfort and compassion. But I can’t fix it. I can’t fix it.

That sucks. No one should ever have to see their child suffer so much. Every day. Every day. I’ll say it again: every day.

And we are so fortunate right now as Lily is going through a relatively stable period. And the ‘relatively’ is truly that. I am not trying to sugarcoat any of it: our ‘normal’ is anything but that.

So it’s been 5 years. And we’re getting closer to the ‘cure’ but it’s still not here. And every day as Lily grows and Rett continues to ravage her body, that ‘cure’ looks less and less like a cure for her. At this point I’ll take whatever it is we can get. Just to let her have the ability to breathe with ease, to wake up and not be in pain… I’ll take it.

I can’t believe she’s going to be 8 in a few weeks. I can’t believe how much she’s grown and changed. I can’t believe how much I’ve transformed because of her. And for that, I am grateful.

In so many ways, she’s such a ‘normal’ kid. She’s been putting together weekly hair menus letting me know how she wants her hair done every day. How freaking cute is that? Currently she’s all about pigtails. As you can see from the menu and hairstyle:

Her birthday is on the 8th of February. And I wish I could give you a list of things she wants as presents. But I don’t have one because she cannot tell me outright. So if you want to do something for her, consider making a donation to Rett Syndrome research. Not only will it go to her future, but the future of all her other Rett sisters and brothers.

With love,

C & L

And… we’re moving again!

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Tomorrow the movers are coming to pack up and gather all of our stuff and then on Friday we’re in our new home. It all sounds so simple!

Regardless of the general moving stress, we are all super excited. This is a big change for me and Lily though we’ll still be staying on the UWS. It’s been just the two of us for the past six years. But we are both really excited to start this new chapter, combining homes with Stephen into a beautiful new place which is conveniently located right next to Lily’s school. I kid you not.

Lily is beaming and giggling and talking about her new bedroom and what she wants it to look like. Every time anyone speaks to her about it she just lights up. This kid is just amazing. So open-minded and invested in this new adventure. It’s almost exceeding the buildup to Christmas.

She independently navigated this page the other day when talking to Elaine, her speech therapist. (FYI this is a complex sentence to structure using Tobii/PODD so it’s pretty mind blowing.)

And then this is what she said she wants for the color of her room:

Consider it done kid!

Four years in…

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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.

Crimp2018

Lily told her speech therapist yesterday (using the Tobii) that she wanted crimpy hair today.   She was quite pleased with the result!

 

 

 

 

 

 

Baby Animals

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Dreaming of having a pet bird

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.

Giving Thanks

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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.

With Gratitude,

C & L

Writing letters part 2

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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…