Double Digits

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 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.


Winter wonderland

Swimming like a mermaid

This week we’ve been down in South Florida visiting family and friends. We’ve been able to accomplish so much in such little time… like mommy getting to see not one, but THREE of her high school friends. And of course spending as much time with our family as we can. And swimming. And eating. And having dance parties. And swimming some more.

The weather has mostly been sweltering. But it hasn’t stopped this kid from picking up new skills in the water. She is doing all sorts of amazing things independently in the pool. And the ocean (with the courtesy of her swimmies). Here are a few shots from our visit.

Happy summer!


C & L

Lily’s luau birthday bash

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.


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

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,


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


The past few months have been extremely stressful so writing posts has not been a top priority.  However, I didn’t want to leave you hanging for too long.  I’m proud to say that Lily has been showing improvement in many areas.  Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part).  Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake.  And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger.  She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating.  It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt.  Whatever.  The kid is eating.

But I can’t completely relax.  We still have days that are difficult for her.  Really difficult.  Heart-breakingly difficult.  And I’m trying to shake the hangover of what she went through these past few months but I can’t completely.  Rett Sydrome is always lurking around and we just never know when it will pounce.  I can’t make this the focus of my attention as it will destroy me.

So I remain in hope.  And there’s good reason.  Last month two significant announcements were made about Rett research.  One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls.  And the other was regarding the path toward a cure using gene therapy.  Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.


C and L


Spring Break 2017

Spring Break 2017 in South Florida with Grandma and her cousins!

La-la-land vs. reality

Below are two posts/articles written by mothers of special needs kids.  The first one is quite popular and somewhat annoying, if not clawingly uplifting.  The second post is one which, once I read, felt like it was something I would have written.  It resonated with me that much.



c1987 by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.




c2008 By Laura Krueger Crawford

If you have a child with autism, which I do, and if you troll the
 Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a
trip to Italy. You read all the latest travel books, you consult with
 friends about what to pack, and you develop an elaborate itinerary for your
glorious trip. The day arrives. You board the plane and settle in with your
in-flight magazine, dreaming of trattorias, gondola rides and gelato.

However, when the plane lands you discover, much to your surprise, you are 
not in Italy — you are in Holland. You are greatly dismayed at this abrupt
and unexpected change in plans. You rant and rave to the travel agency, but 
it does no good. You are stuck. After a while, you tire of fighting and
 begin to look at what Holland has to offer. You notice the beautiful tulips, 
the kindly people in wooden shoes, the French fries and mayonnaise, and you
 think, “This isn’t exactly what I planned, but it’s not so bad. It s just
 different.” Having a child with autism is supposed to be like this — not
 any worse than having a typical child — just different.

When I read that, my son was almost three, completely non-verbal and 
was hitting me over a hundred times a day. While I appreciated the intention
 of the story, I couldn’t help but think, Are they kidding? We are not in
some peaceful countryside dotted with windmills. We are in a country under
 siege — dodging bombs, trying to board overloaded helicopters, bribing
 officials — all the while thinking, What happened to our beautiful life?

That was 5 years ago. My son is now 8 and though we have come to 
accept that he will always have autism, we no longer feel like citizens of a
battle torn nation. WITH the help of countless dedicated therapists and 
teachers, biological interventions, and an enormously supportive family, my
son has become a fun-loving, affectionate boy with many endearing qualities
and skills. In the process we’ve created well our own country, with its 
own unique traditions and customs.
 It s not a war zone, but it s still not Holland. Let’s call it

In Schmolland, it is perfectly customary to lick walls, rub cold
 pieces of metal across your mouth and line up all your toys end to end. You
 can show affection by giving a “pointy chin.” A “pointy chin ” is when you 
act like you are going to hug someone and just when you are really close,
 you jam your chin into the other person s shoulder. For the person giving 
the “pointy chin” this feels really good, for the receiver not so much, but
 you get used to it. For citizens of Schmolland, it is quite normal to repeat
 lines from videos to express emotion. If you are sad, you can look downcast 
and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop
 me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature
 presentation” says it all.

In Schmolland, there’s not a lot to do, so our
 citizens find amusement wherever they can. Bouncing on the couch for hours,
 methodically pulling feathers out of down pillows, and laughing hysterically 
in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from
 other countries. We try to assimilate ourselves and mimic their customs, but
 we aren’t always successful. It s perfectly understandable that an 
8-year-old boy from Schmolland would steal a train from a toddler at the
Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly 
not understandable or acceptable in other countries, and so we must drag our 
8 year old out of the store kicking and screaming while all the customers 
look on with stark, pitying stares. But we ignore these looks and focus on
the exit sign because we are a proud people.

Where we live, it is not
 surprising when an 8-year-old boy reaches for the fleshy part of a woman’s
 upper torso and says, Do we touch boodoo? We simply say, “No we don’t
 touch boodoo” and go on about our business. It’s a bit more startling in
 other countries, however, and can cause all sorts of cross-cultural
 misunderstandings. And, though most foreigners can get a drop of water on
 their pants and still carry on, this is intolerable to certain citizens in
 Schmolland who insist that the pants must come off no matter where they are,
 and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting
 to us, yet are still separate entities. Together we make up a federation of
 countries, kind of like Scandinavia. Like a person from Denmark talking with
 a person from Norway, (or in our case someone from Schmenmark talking with
 someone from Schmorway), we share enough similarities in our language and
 customs to understand each other, but conversations inevitably highlight the 
diversity of our traditions. Oh your child is a runner? Mine won’t go to
the bathroom without asking permission. “My child eats paper. Yesterday he
 ate a whole video box.” “My daughter only eats 4 foods, all of them white.”
”My son wants to blow on everyone.” “My son can’t stand to hear the word no.
 We can’t use any negatives at all in our house.” “We finally had to lock up
t he VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250.
(CS update: As of 2013, the rate became 1 in 55 children in the US.  No joke.)

Something is dreadfully wrong. Though the causes of the increase are
 still being hotly debated, a number of parents and professionals believe 
genetic pre-disposition has collided with too many environment insults –
toxins, chemicals, anti-biotics, vaccines — to create immunological chaos 
in the nervous systems of developing children. One medical journalist
speculated that these children are like the proverbial canary in the coal
mine here to alert us to the growing dangers in our environment. While this
 is certainly not a view shared by all in the autism community, it feels true 
to me.

I hope that researchers discover the magic bullet we all so
 desperately crave. And I will never stop investigating new treatments and 
therapies that might help my son. But more and more my priorities are 
shifting from what could be to what is. I look around at this country my
 family has created, with all its unique customs, and it feels like home. For 
us, any time spent “nation-building” is time well spent.