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.
C & L
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.
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…
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!
A few months ago while Lily and I were flying back from Florida, we struck up a conversation with the woman sitting next to us. It turns out that this woman works in the media – in a pretty high-profile way. Vera had never heard of Rett Syndrome and was intrigued. And so we kept in touch.
About a week into my 5-week leave from work this summer, she interviewed me for an online magazine. We weren’t quite sure what the focus of the interview was going to be but it became pretty apparent with the first few questions that it was going to be about how the hell I manage working full time and caring for Lily.
You see – I was week one into a 5 week leave and it hit me in these first five days of not going into the office just how much I have on my plate with Lily. Managing her 4 caregivers, her 2 home-based therapists, her 15+ doctors, filling out medicaid paperwork, filling out private insurance paperwork, making appointments, thinking about her diet, writing about her diet, counting calories, carrying therapy over into the home, ensuring that I’m communicating effectively with her teachers and therapists at school ALL while managing a home (laundry? dishes?). Holy shit. I really didn’t know how I was keeping up. And now that I’m back at work, I’m still not fully sure how it all comes together. But it does (hint: super helpful caregivers and therapists/teachers). And so I continue – on most days, with a smile on my face. Because I really have the sweetest, smartest, bravest, funniest, coolest kid in the world.
If you want to check out our interview, click here.
Both Lily and I transitioned easily back into our routines. I returned to work with a clear head about the direction we were/likely are going in with the feeding tube. Of course my kid upended it all by devouring most everything in her sight after the appointment with her pediatric GI (who recommended a small feeding tube). So for now, the decision is still somewhat up in the air. She’s still eating well. But I’ve done my research, I’ve written out the pros/cons and I’m as comfortable as can be about this situation.
Which is a good thing as it’s been a crazy few weeks at the office. Thankfully my team held things together while I was out. Actually they did more than hold things together – they did a phenomenal job managing some really complex projects that arose during my absence. And the projects have kept piling up since my return. Currently my team is running multiple community fundraisers and assistance programs for employees who have been severely impacted by these recent disasters (the company I work for operates in over 100 countries and 500 cities). Additionally we hosted Cherie Blair (former Prime Minister Tony Blair’s wife and kick-ass advocate for women’s rights) for a conversation and cocktails the day after the earthquake in Mexico. It’s been both a a sad and inspirational time at work. So much devastation but also so much support for our employees (which my team and I are managing). And to top it off, a cool panel session with some awesome ladies.
As for Lily – she continues to have her ups and downs. But is loving school and her therapies. I’m getting notes from her teachers and therapists that she is blowing them away. I’m so proud of this hard-working kid.
From top to bottom:
- Mom working hard
- Lily letting me know what she thinks about Rett Syndrome on a bad day
- Excited about the first day of first grade!
I just got this note from Lily’s teacher. After yesterday (we were at the hospital for a scheduled appointment for most of the afternoon – she was a champ throughout), this kid deserved to have a great day!
Lily had a great day! She was hungry at the end of the day, and was drinking more of her smoothie as she walked out of class. She may want a snack when communication camp is over. I gave her a blueberry cereal bar, which she loved (recorded it in her food diary). She squealed with delight when we brought it out. At recess, she was walking up to kids from other classes and giving big smiles. It was awesome! She was using her hands a lot today. With an elbow tap, she waved several times (at Ally and then again at the student in the attached picture, Jamie). She also gave a high five. She kept her hands in the shaving cream without support for I think 27 seconds! She also was playing with a switch operated toy in which you push a button to make a toy dog walk/bark. She was laughing and working hard. Great job sorting during math and working on letter ID activities as well.
I’m so proud of this kid!
Even though last night was a tough one (she may have had a seizure and it made her very upset), today Lily was excited about going to school as it’s ‘superhero’ day.
This kid is MY superhero. Every day. She smiles in the face of adversity. She has fierce determination. She is silly. She is smart. She never gives up. And she rocks a jumpsuit.
Superheroes live in the hearts of little kids fighting big battles. #reverserett