Lily and I just got back from a week in Florida visiting our family. It was a good trip. But a tough one. It’s not as easy to travel with her now. She’s bigger. Her symptoms have evolved. And caring for her has gotten more complex.
I’m exhausted. Lily is too. But damned if we’re going to let Rett Syndrome keep us away from our family.
Here are a few photos of our vacation. There were a lot of smiles. But there were definitely a lot of tears and frustration and really hard days and very scary moments too. They just don’t make for good pictures. So I’m only going to share the happy ones.
I’m also going to share an article from another special needs mom who writes about the isolation and exhaustion that comes with being on this path. Thank you Amy from Raising the Extraordinary for so beautifully and eloquently explaining what this journey is like for us moms.
And thank you Florida family for loving and supporting me and my girl so very much.
This came home from school yesterday. 100% imagined by Lily.
Lily had such an amazing birthday. The entire school was excited for her birthday. Even the janitor wished her a happy birthday when we walked through the front door that morning. She had the best day ever – dancing and eating cake with her friends, teachers, therapists and parents.
When she got home from school, we opened her awesome presents and then went to dinner at one of her favorite places – Playa Betty, with Mommy, Shamekia and Stephen!
The next day I took her for another birthday present – a haircut! She’s been obsessing over bangs and medium length hair so we went to Marco down in Soho for a new look!!!
It was only fitting given the recent poem she wrote about her birthday…
AND we raised close to $6500 for Rett Syndrome Research!!! Thank you to all who donated and helped make my kids birthday so very special.
On February 8th, Lily is going to be seven years old. In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I am launching our second annual fundraising campaign. A generous (and anonymous) donor and I have committed to matching up to a total of $1500 raised on her RettGive.org page between today and the 8th.
I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe. I see how hard she works to do – well – almost anything. I pray for the day when Rett Syndrome will be just a painful memory.
For those who have already donated… from the bottom of my heart, thank you! Your support and love is palpable. For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.
Lily is the bravest, sweetest, smartest, hardest working almost 7 year old that I know. And I know that one day in the near future she, and her Rett sisters and brothers, will be cured. But without funding, it will remain a pipedream.
Until that day happens, I will continue to fundraise and advocate and fight. For her.
We didn’t make it to Florida this past weekend as Lily was too weak to travel. It wasn’t because of her tummy (which was the big concern last week at this time) but because she was battling a fever.
I got a call from school last Wednesday telling me that Lily had asked to go to the nurse. When the nurse took her temperature it was hovering around 100 degrees. Not too bad but the poor kid was feeling miserable. And she wanted to go home. So I rushed from work to get her.
By the time we got home, she was her normal, bubbly self. But over the course of the next 24+ hours, she would swing from feeling fine to just plain awful. At one point she had the shivers so bad that I had considered taking her to the ER. (Sidenote: high fevers can trigger seizures and as Lily is already prone to them, it was imperative to keep her fever regulated.)
On Friday (the day we were supposed to fly out) I took her to the doctor where we ruled out strep, the flu and UTI. Likely just a viral infection. I was hopeful that we could get to Florida on Saturday but when I checked her temperature that morning, it was not good.
So we’ve been home in NYC on this cold and blustery weekend. Cuddling up a storm, watching movies, and enjoying the visitors who have come to help out and cheer us both up.
This is the first morning in four days that she’s not been feverish. So tomorrow she goes to school. I’m still taking the day off work. I need some time to recuperate!
We are both so sad to have missed seeing our family in Florida. But I’m so grateful that we were only battling a regular kid issue. Kids get sick from time to time. And Lily handled it all with such grace. She’s amazing.
As you know, the east coast was hit with quite the storm. Lily and I hunkered down and did our best to enjoy her day off from school.
We played dress-up, read books, watched movies and even went outside for a nanosecond. She doesn’t like the cold or the snow. She too must be a Floridian at heart like her momma.
Winters are not easy for Rett girls. Not only is it more isolating than usual, but also they struggle more with their health. Peeing, sleeping, breathing and eating have become concerns again in this house. For the most part, she’s staying positive. But she’s had more than a few moments of feeling miserable and sad. I’ve seen many more tears than usual these past few weeks.
We are both trying to keep our spirits up. It’s not so difficult to do as we are heading to Florida to visit our family next week. We are both excited to feel sun on our skin and sand under our feet. And of course see our relatives!!!
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.