It’s 5:30pm on the 24th of January. And it just hit me. Today marks 5 years since d-day–Lily’s Rett diagnosis day.
What a 5 years it’s been. What a roller-coaster. But I wouldn’t give it up for anything. I’ve got the sweetest, coolest almost 8 year old I know. She is my joy, my inspiration.
Don’t get me wrong, it’s not easy. Every day I say to her when she’s having a tough moment–like trying to walk in the morning or crying uncontrollably in the middle of the night–that I can’t fix things. But that I can make them better. With love and comfort and compassion. But I can’t fix it. I can’t fix it.
That sucks. No one should ever have to see their child suffer so much. Every day. Every day. I’ll say it again: every day.
And we are so fortunate right now as Lily is going through a relatively stable period. And the ‘relatively’ is truly that. I am not trying to sugarcoat any of it: our ‘normal’ is anything but that.
So it’s been 5 years. And we’re getting closer to the ‘cure’ but it’s still not here. And every day as Lily grows and Rett continues to ravage her body, that ‘cure’ looks less and less like a cure for her. At this point I’ll take whatever it is we can get. Just to let her have the ability to breathe with ease, to wake up and not be in pain… I’ll take it.
I can’t believe she’s going to be 8 in a few weeks. I can’t believe how much she’s grown and changed. I can’t believe how much I’ve transformed because of her. And for that, I am grateful.
In so many ways, she’s such a ‘normal’ kid. She’s been putting together weekly hair menus letting me know how she wants her hair done every day. How freaking cute is that? Currently she’s all about pigtails. As you can see from the menu and hairstyle:
Her birthday is on the 8th of February. And I wish I could give you a list of things she wants as presents. But I don’t have one because she cannot tell me outright. So if you want to do something for her, consider making a donation to Rett Syndrome research. Not only will it go to her future, but the future of all her other Rett sisters and brothers.
C & L
I’m not generally a resolutions type gal, I prefer to use the word ‘guidelines’ when plotting out the year ahead. For example, some of my guidelines for this year are to practice gratitude more often, learn how to do a handstand and get more sleep.
My child, on the other hand, has created a robust list of resolutions that are truly inspiring. She’s such a funny, smart, silly kid. And I hope that 2019 continues to be a great year for her. And for you all.
Happy New Year!
It has been too long since I’ve written. Life has taken over lately and putting my thought to words has taken a bit of a backseat. Mainly it’s because I’m struggling with the reality of Lily getting older (she’ll be eight in February) and of what Rett Syndrome can continue to take away from her. And not having any way to stop this.
Don’t get me wrong, our lives are full of so much beauty and love and laughter. Lily is in ‘good’ health. Stephen and I are also. And we both have great jobs and live in a beautiful home and can afford to live a comfortable life. Lily goes to a nurturing school down the street where she’s got wonderful teachers and therapists. At home she’s got amazing caregivers and therapists. We’ve got a fantastic house cleaner (who Stephen thinks is one of the most important people in my life – he’s probably right!). But there is always this nagging feeling tugging at me. Worrying about Lily and her future and her health.
‘They’ are saying that in 3-5 years there will be a cure. In just a few short months, the first brave Rett girls (and their families) will be participating in the first human gene therapy trial to try to reverse Rett.
Best case scenario is that Lily will be 10 by the time a cure may be available to her. But as every day goes by, and Rett continues to do its horrific thing, what that ‘cure’ can look like becomes less and less optimistic. I try not to think about it too much.
But we just saw the Rett specialist a few weeks back and earlier this week was the Reverse Rett Gala here in NYC. And there’s been some big press about it recently. So it’s top of mind. How could it not be?
I need to find a way to push this all away and focus again on all the good that we have right here and right now.
Wish me luck.
A few random photos from the past few months (from top to bottom): Lily on her first day of 2nd grade, hiking with the mom in the Catskills, Sunday dinner at Grandma’s in Florida, Halloween (Lily is wearing my Halloween costume made by my dad almost 40 years ago, Stephen and I on a weekend getaway, making pesto with Grandma at our new apartment
This morning Lily, Urzsula (one of her beloved caregivers) and I met our cousins the Darlings at the Children’s Museum. We had a blast, especially at the dance party!
Everyone at the museum was super accommodating to Lily; they even let us choose most of the dance music. Watching Lily run around with a big smile on her face – enjoying the music, the people, the mirrors – was such a relief. You see, Rett Syndrome has been very unkind to her lately. In the mornings, she can barely walk. And she wakes up screaming and shaking and scared multiple times throughout the night.
At the museum today it was nice to have a flash of an ‘almost normal’ existence – for both of us. I don’t take these good days for granted.
Afterwards we went around the corner to Fred’s restaurant for lunch. It was a busy day on the streets of Manhattan and people were overflowing onto the sidewalk waiting for a table. The host (who we learned later has a son with Downs Syndrome) saw the six of us coming and said ‘we’ve got a table inside for you’. They ushered us in and we had a fun and tasty lunch. When I asked for the check, I got this instead:
I saw your family altogether in the Children’s Museum and was so touched by the love and affection and energy you all have. I have a cousin with a daughter with similar difficulties and know what effort it takes and the constant worries you must have.
I hope it all goes well for you. Have a great Sunday!
I have no idea who this kind stranger was. All the adults around the table (especially me) were floored. What a beautiful and thoughtful note. And what an amazing and generous gesture.
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.