Lily’s luau birthday bash

This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. We had Lily’s luau birthday bash took at school this afternoon in anticipation of her upcoming Make-A-Wish trip to Hawaii!

Her party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position) and then the luau with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan. And then we had dinner at Playa Betty – her favorite restaurant. Afterwards we walked/ran home with excitement to have some more singing of ‘happy birthday’ and blowing out candles.

In lieu of presents we are asking for donations to the Rett Syndrome Research Trust if you so wish: https://rettgive.org/projects/a-cure-for-lily/

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Today

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.

With love,

C & L

Resolutions

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!

Time flies

Dear reader,

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

A friendly reminder

Please don’t tell me you are “sorry”. When you find out someone’s child is disabled (i.e., has Autism, Rett syndrome, Down’s syndrome, etc.) do not say you are “sorry” – we understand you mean well, but it is incredibly upsetting to hear. Our child is still our child. She has not died and we are not at all sorry she exists. We are madly in love with her. As you are with your child. Every accomplishment, development, laugh, makes our hearts sing! Just as your child’s accomplishments, development, happiness, makes your heart sing. Every tear she sheds breaks our hearts. Just as your child’s tears breaks yours.

Granted, ours is not a life we likely would have chosen. And we have had to drastically shift our expectations (like continental – tectonic plate shifts). And we have had to come to terms with a life completely different than the one we had expected to lead. And it is a challenge. And it is not one we would ever expect you to understand. And it is not one we would ever want you to lead…it is hard. And we are NOT sorry. Our child gives us unspeakable joy and you saying you are sorry about her is heart breaking and painful to hear. We only wish you could see her as we see her and enjoy her as we enjoy her…So do not tell us you are sorry.

Just that.

Lifted, almost verbatim, from Jocelyn Gould Turken, super Mom and autism advocate. ❤️

Lily was featured in this years NYC Disability Pride Parade. This kid is making headlines. And changing perceptions about what it is like to live with a disability. She is my hero.

Let the holidays begin!

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.

 

 

Fearless

Hanging out at mom’s office in midtown Manhattan after a harrowing experience.

Lily’s fearlessness is something I always intuitively recognized, but it came to the forefront a few weeks back when I was packing up the taxi to take her to my office for the day.  Her hand slipped from my grip for a split second and she darted out into the middle of Amsterdam Avenue as the stoplight was just about to turn green.  I was able to grab her before anything bad happened but I was completely rattled.  She, on the other hand, was not.

Maybe fearless isn’t the right term – it’s more of a lack of understanding of consequences when engaging in certain activities.  Lily is learning to read and write and do math and all the other things that a typical 7-year old would be learning in school.  She’s really smart.  But there’s this missing filter that I find to be quite baffling.

When I’m baffled by something, I turn to research, which includes reaching out to other Rett parents to hear their experiences.  Turns out that this missing fear filter is all too common for ambulatory Rett girls.  I received over 40 comments on the Rett family support group from parents telling me stories of their ambulatory kiddos darting off in the middle of busy airports or fleeing playgrounds or even worse.

Fearlessness isn’t necessarily something that would spring to mind when thinking of a child with Rett Syndrome, is it?  But from what I’ve experienced – and heard from other parents – this is a Rett symptom that is VERY REAL.  I’ve not read about it in any literature or in any research papers.  There are so many other crazy symptoms to keep an eye out for, this is one that’s just been overlooked.

So how am I managing this?  Well, other than taking a healthy dose of Xanax to calm my nerves,  I’ve spoken to school about my concerns and they are adding goals to her IEP about helping her better understand dangerous activities and why she should not be engaging in them.

Also, we’ve found an outlet for her fearlessness: rock climbing!  For the past two weeks Lily’s dad has taken her to Brooklyn Boulders, an indoor rock climbing gym, where she scales the walls.  Literally!  Yesterday this kid rang the bell twice, which in rock-climbing lingo means she climbed to the tippy top of the wall.

On one hand, I’m eternally grateful that I have a child with Rett Syndrome who rock climbs fearlessly.  I know too many Rett moms who would be overjoyed with seeing their sweetie take a few steps.  So I don’t take my child’s abilities lightly.  However, managing her lack of a fear filter – especially as she gets older – is something that her nannies, therapists, teachers, relatives, friends and parents will ALL have to stay on top of.  So, I thank you all in advance for helping us navigate this dangerous and little known Rett symptom.

With love and gratitude,

C & L

       Rock climbing with her dad in Brooklyn!