Lily goes to a 12 month program which is super important for girls with Rett – consistent therapy (physical, occupational and speech) helps Lily maintain her skills, and learn new ones. Yesterday was her last day of summer school and tomorrow begins her whirlwind travels.
I was initially overwhelmed about trying to plan out Lily’s four week hiatus – will she be well enough to travel? Will I be strong enough (emotionally and physically) to handle traveling with her (even if she is well enough)??? Where will we go and what will we do?
There were so many questions and concerns ravaging my brain. I was frozen. I couldn’t make any decisions. And as many of you know, this is not characteristic of me. I’m (very) action-oriented. According to Stephen, I’m hyper-productive. I never stop strategizing and planning and executing on plans.
But first, I had to make peace with a few things before I could even begin mapping out our plans. The main issue was this: if I wanted to truly enjoy my vacation with Lily, I needed to bring a caregiver along. Could I take care of Lily on my own? Sure. Would I be completely exhausted and malnourished in the process? Yes.
Needing help was feeling like defeat to me. Especially when it comes to caring for my own kid. I’m not going to say I’m entirely over that feeling of defeat BUT I can now look at the upcoming few weeks with the knowledge that both Lily and I will have a fun, safe and restful time.
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.
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!