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

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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!

 

And… we’re moving again!

Tomorrow the movers are coming to pack up and gather all of our stuff and then on Friday we’re in our new home. It all sounds so simple!

Regardless of the general moving stress, we are all super excited. This is a big change for me and Lily though we’ll still be staying on the UWS. It’s been just the two of us for the past six years. But we are both really excited to start this new chapter, combining homes with Stephen into a beautiful new place which is conveniently located right next to Lily’s school. I kid you not.

Lily is beaming and giggling and talking about her new bedroom and what she wants it to look like. Every time anyone speaks to her about it she just lights up. This kid is just amazing. So open-minded and invested in this new adventure. It’s almost exceeding the buildup to Christmas.

She independently navigated this page the other day when talking to Elaine, her speech therapist. (FYI this is a complex sentence to structure using Tobii/PODD so it’s pretty mind blowing.)

And then this is what she said she wants for the color of her room:

Consider it done kid!

Faith in humanity

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.

 

As time goes by

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.