Category Archives: Speranza/Hope

Adventures with Mom

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Yesterday Lily didn’t have any therapies after school and Urszula had the day off. AND the weather was nice. A rare opportunity presented itself to me: taking my girl on an outing with no real agenda.

We walked up Columbus Ave to window shop, popping in and out of stores she wanted to explore. Once we hit 72nd, we went east to Central Park—Strawberry Field to be specific—where we listened to Beatles cover bands for a while.

Right now we are all a bit Beatles crazy in the house. So I’m not surprised my subconscious brought us to Strawberry Field. While there, Lily confided to me that Paul is also her favorite. (Sorry Auntie Angela – I was with you for a long time about John but after watching the Beatles documentary, I’m all about Paul!)

From there we walked through the park down to 67th. And then stopped off at a bookstore as I’m trying to find a book or two of poetry for her as I think she’d really enjoy it. We didn’t find a book but she loved exploring all the different sections, especially the photography books.

From there, we made our way back home.

It was quite the adventure and Lily didn’t tire at all – though I did a few times and so we would sit and people watch. She was smiling and happy throughout. And so was I.

#citygirls #uws #centralpark #beatlemania #rettlife

Practically perfect…

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It’s continued to be a roller coaster these past few days. But hopefully we’re turning a corner. More smiles and less tears. And lots of creativity today.

Today she made art with her hands in school (photo of that forthcoming) and after school she decorated the cover of her school communication book (it’s the book that goes back and forth between home and school so the home teachers and school teachers are connected). After she decorated it, she told Elaine ‘show mom’ in ‘home office’. (I was working from home today). The kid was so proud of her work. And so was I. So creative. #lilypoppins

The road to recovery… for us both

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Last week, a few days after Lily’s accident, Stephen gently nudged me out of the house to go to a previously scheduled yoga retreat. I was a wreck. I didn’t want to go. But I also didn’t want to subject my already traumatized child to a mother who was in break down mode. 

So I begrudgingly packed my bags and went to Mexico. It was beautiful. It was healing. It was filled with the most magical people and experiences. I was conflicted  the entire trip. But what kept me from ditching my retreat was the logistics of trying to find my way out of the jungle on my own. I could have done it. But it would have been a lot of work. And for what? Getting back one or two days early?

So I stayed. And I laughed. And cried a lot. And did a lot of yoga. And slept. 

Which is a good thing because Lily’s recovery is going to be far from straightforward. 

Lily will be having oral surgery on Monday (yes this coming Monday) to have her teeth repositioned.

Then two weeks later she will need root canals in both teeth as the nerves will be damaged when they move the teeth.  And after the root canal, the tooth that was chipped will be reconstructed. 

She’ll go under anesthesia for both procedures. 

The logistics of making this all happen and in such a quick turnaround has my head buzzing. Her dentist helped tremendously by making the dental appointments, including procuring an anesthesiologist for both procedures. But the pre-op appointments, the multiple calls with all the doctors, and the paperwork… oh the paperwork. Well, that’s mostly been on me.  And today Stephen is taking over as I’m heading to another previously scheduled day-retreat. 

Things are moving in the right direction. And for that I am grateful. I’m also grateful that I’ve got the most resilient kid in the world as well as the most encouraging and loving partner. 

But I can’t downplay how draining these next few weeks will be. So if you get a chance, send some positive thoughts our way. This kid, and her momma, could sure use them.

Getting stronger

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Six years ago… she needed to be harnessed onto the treadmill to be able to walk. She was having dozens of seizure-like episodes daily. She lost her appetite/ability to eat. Everything deteriorated. I couldn’t dare articulate this back then, but I wasn’t sure she’d survive. I wasn’t sure I’d survive.


The recovery was slow. She weighed 40 pounds for almost 4 years. I didn’t know if she’d grow again.


Now we are in a place where she keeps growing out of her clothes. It’s always the last thing I think of – that she’s grown. I was blaming the clothes dryer for a while but then remembered that kids grow. Kids should grow.


Earlier this week in physical therapy, Lily did 10 minutes on the treadmill at speed 3. A far cry from where she was six years ago.

There is so much people take for granted but I marvel at every pound gained. Every new skill attained.


This is Rett Syndrome.

Rett Syndrome and a pandemic don’t mix together well

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I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.