Tomorrow is D-day. The day four years ago when we got Lily’s Rett diagnosis. I remember it like that recurring bad dream that you just can’t shake. The worst dream – actually – you could imagine having about your child. Unfortunately it was our reality. It is still our reality.
I naively thought/hoped that by now, there’d be a cure. No one made me that promise, but it was a piece of hope that I held onto as the science – even four years ago – seemed so promising.
Today, four years in, I’m living in that in-between space. I can’t have too much hope nor can I have too much despair. Every few weeks I hear positive news about how much closer we are to a cure. Every few days I hear about another Rett girl dying. So I try to walk around with blinders – shutting out the hope and the despair, living in the now. And some days, this trick actually works.
But enough about me. How is this impacting Lily? She will be seven years old in a few weeks. Cognitively she’s all there. But her body is at war against her. And this is taking its toll. I see it in her eyes – she has SO MUCH she wants to tell me. She has SO MUCH to say. And she is SO FRUSTRATED. I’m grateful for the Tobii and her therapists – because of them we have a window into her thoughts. But this is a very high-level window. We know how she feels, how she’d like her hair to look, how much she knows about the weather and the date and the time and the book that she’s reading. We know that she has a very silly sense of humor. Trying to have an in-depth two-way conversation with her, however, proves to be elusive. ‘Lily, WHY are you sad?’ ‘Lily, WHAT exactly hurts right now?’ ‘Lily WHY do you keep talking about monsters?’ These are some of the questions that just can’t be answered. At least not yet.
Lily desperately wants to be a ballerina. But there are some mornings when she can barely keep her feet under her. She desperately wants to play with other kids. But only once – yes ONCE – in almost seven years have I seen neurotypical kids look to actively engage with her. Once. It was at my aunt’s birthday party last year and these sweet kids (who were complete strangers about Lily’s age) came over and asked to play ‘Rock, Paper, Scissors’ with her. Even though I had to do hand-over-hand and we lost terribly (I still don’t fully understand those rules), she had the best time ever. I cried. They were mostly happy tears.
I tell her every day that she can do whatever she sets her mind to. I tell her every day that she is the bravest, hardest working, smartest, silliest, prettiest almost 7 year old that I know. That second sentence is truth. The first sentence I desperately want to be true. I am basically willing it into existence.
My ask to you is this: if you were thinking of getting Lily a birthday present, the best present you can give right now would be to make a donation to Lily’s fundraising page for the Rett Syndrome Research Trust. I don’t care if it’s $5 or $5000. Help me will her cure into existence. The science is so promising. And if I take my blinders off for a moment and try to bask in the hope, I’m pretty sure that by the time she’s 10, there will be a cure.
I’ve said this before and I’ll say it again: Rett Syndrome is no fucking joke. Even for a relatively healthy and high-functioning girl like Lily.
Even though her team of caregivers and I actively manage her food intake and output, she still gets terribly backed up from time to time. Last night, however, was exceptional. She was in so much pain and was trying so hard. None of my standby tricks worked.
It was a tough call to make – do we spend the night in the hospital or do we ride it out at home? I’m so grateful to have a plugged in network of Rett moms to turn to in moments like these. And also so grateful to have had Shamekia the nanny (soon to be nurse) on hand with me for much of it. Stephen was on standby. And John came over to drop off supplies from the pharmacy. I felt very supported. But also very scared. And helpless. It’s in moments like these that I wish I went to medical school. I made the right decision last night to stay home. But that might not always be the case.
Thankfully Lily woke this morning with a smile (we finally had some success unclogging her late last night). She’s the most resilient person I know. She’s my hero.
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!!!
Hello everyone who wants to Reverse Rett,
On Wednesday 10/25 a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman and Nick Offerman participated in a PSA video and many more will be part of a social media campaign. Several celebrities turned their clothes inside out and backwards to commemorate Rett’s reversibility.
The PSA video is scheduled to be published on AccessHollywood.com which is amazing but it’s up to all of us make sure this campaign makes waves. For a preview of the video, check it out here: rettgive.org/reverserett.
There are 3 things we are asking everyone who wants to cure Rett to do on Wednesday.
- Share the celebrity video on every social channel you use. Include this link rettgive.org/reverserett and #ReverseRett in your post.
- Post a photo or video of yourself, your family and/or your loved one with Rett wearing clothing backwards on every social channel you use. Suggested copy to accompany your photo or video: “I/we want to #ReverseRett so Lily can [insert a goal – talk/do cartwheels/breathe normally/etc.]. Join me? Here’s how: rettgive.org/reverserett.”
- Ask everyone you know who has supported Rett to join in.
I will also email a link to the video to all of you once it’s live.
If you cannot do these things on Wednesday, then do it on Thursday. Better to post late than not at all.
Let’s Make Rett History!
C & L
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!
Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.
Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.
Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.
We also had a lot of fun using the Snapchat filters once all the books were read.
The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!
And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.
The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.
We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.
Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.
Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.
On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).
And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.
Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.
Om Namah Sivaya.
I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.
Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.
Thank you momma-warrior Joanne for sharing your insights, specifically the ones on bizarre symptoms and respite. She has nailed it with her commentary on what Rett Syndrome has taught her. Like I said in my earlier post, it’s a hell of a disorder.