A visit to the library, with Teetee!


I didn’t mean to keep you all hanging from my last entry. I did take Lily to the library as she requested. But we had an extra special guest with us – Teetee Angela from Florida!!!

Initially Lily was enthralled with the library. We read a few books, tried to find a few new ones (Teetee and I thought the book Chicken Cheeks was hilarious; Lily was ambivalent) and flirted with the idea of taking her to the ‘get ready for kindergarten’ program that was serendipitously starting while we were there. However, at that point she had enough and we left.

We had such a great weekend with Teetee.  Not only did we go to the library, but we went to Brooklyn Crab for lunch and went swimming at a friend’s pool where Lily had the time of her life.  We were so sad when it came time for Teets to head back to Florida.  Good thing we get to see her again in a few weeks!!


Don’t go Teetee Angela!






A visit from the tooth fairy

Was anyone else aware that on top of all the more well-known symptoms of Rett Syndrome (like loss of language, physical disabilities, breathing problems, severe anxiety, sleep disorders), there are so many lesser known ones, like excessive tartar buildup?  Yup, my kid has that too.  So what does it mean?  We go to the dentist every 6 weeks for a cleaning.

Thankfully we’ve found a wonderful dentist who puts Lily completely at ease.  For example, the last time we were there for a cleaning, we had to get her two bottom front teeth pulled (her baby teeth had popped up behind them and were there for a while).  This kid didn’t cry once – not when they gave her the novocaine.  Not even when they pulled her teeth.  I cried.  But not her.

Earlier that morning, I explained to her what was going to happen.  And I told her that if we put her two baby teeth under her pillow, the tooth fairy will come.  She became very excited.

That evening, she and one of her therapists had a conversation about it and they wrote a letter to the tooth fairy.  All the words underlined were her exact words on the Tobii.  The tooth fairy found it when she was picking up her baby teeth and putting money under her pillow. And it made this tooth fairy extremely proud!!!



I’m such a sucker.  Of course I had to buy the ridiculous preschool graduation photo.  I mean, it’s the cutest thing in the world.  Second to her class photo, which was taken only a few months befimageore.

It’s been a quick two years for us.  Lily has grown so much, both physically (at least 5 or 6 inches) and intellectually (see next blog post).  We’re going to miss that little cocoon of a preschool.  The teachers, the para, the therapists, even the administrators, are all amazing there.

And I was so touched when the principal asked me to give the preschool commencement address.  I wasn’t quite sure what I was going to talk about but I knew it had something to do with all of the wonderful people I have met, because of Lily.  Thankfully my little speech went off without a hitch.

However, the run-up to the graduation was touch and go.  I wasn’t even sure Lily was going to be well enough to attend.   A week or so prior, her appetite went.  Her sleep meds stopped working (again).  She started having severe panic attacks.  And she was getting clumsier and weaker.  It was a scary period.  The morning of graduation, I wasn’t sure whether to take her to the ER or to school.

Thankfully she woke up that morning feeling much better.  She even managed to have a little bit of her smoothie.  Shamekia (her beloved nanny) met us at our home that morning and helped us get to school.  Lily did not want to miss graduation.  She had practiced so much.  And you should have seen her up on that stage, dancing and laughing and feeling like a star.  It was a beautiful sight.

I’m so glad she went because she had such a fun morning.  She was surrounded by all the people that she loves – her mommy, her nanny (mommy #2 – in the yellow dress), her para Urzsula (mommy #3 – in the striped shirt), her daddy, teachers and therapists, past and present and all of her school friends.  She had a blast.  And thankfully she started eating and drinking again that day.  And from that day forward, she’s been getting stronger and stronger.

We’re still struggling with sleep.  And the panic attacks come and go.  But damned if we’re not going to have the best summer ever.