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.

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Celebrating

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.

Lily’s turning seven!

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.

Heartening news on the research front

For those of you who have donated to Rett Syndrome Research Trust and wondered where your dollars are going, read this heartening article about two pioneering scientists who have just joined our mission to obliterate Rett Syndrome – BECAUSE OF PEOPLE LIKE YOU.
And as a reminder….”Rett is not neurodegenerative and preclinical research has shown that the disorder is dramatically reversible once protein levels are restored. Thus, therapeutics … have the potential to provide profound benefit and potentially cure Rett Syndrome.”
For those who haven’t yet donated, click here to support groundbreaking scientific research so that Lily and her Rett sisters can be rid of this shitty disorder.
Thank you.
Lily crimp

Fiercely determined, and beautiful.

Four years in…

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.

Crimp2018

Lily told her speech therapist yesterday (using the Tobii) that she wanted crimpy hair today.   She was quite pleased with the result!

 

 

 

 

 

 

What a ride

We didn’t make it to Florida this past weekend as Lily was too weak to travel. It wasn’t because of her tummy (which was the big concern last week at this time) but because she was battling a fever.

I got a call from school last Wednesday telling me that Lily had asked to go to the nurse. When the nurse took her temperature it was hovering around 100 degrees. Not too bad but the poor kid was feeling miserable. And she wanted to go home. So I rushed from work to get her.

By the time we got home, she was her normal, bubbly self. But over the course of the next 24+ hours, she would swing from feeling fine to just plain awful. At one point she had the shivers so bad that I had considered taking her to the ER. (Sidenote: high fevers can trigger seizures and as Lily is already prone to them, it was imperative to keep her fever regulated.)

On Friday (the day we were supposed to fly out) I took her to the doctor where we ruled out strep, the flu and UTI. Likely just a viral infection. I was hopeful that we could get to Florida on Saturday but when I checked her temperature that morning, it was not good.

So we’ve been home in NYC on this cold and blustery weekend. Cuddling up a storm, watching movies, and enjoying the visitors who have come to help out and cheer us both up.

This is the first morning in four days that she’s not been feverish. So tomorrow she goes to school. I’m still taking the day off work. I need some time to recuperate!

We are both so sad to have missed seeing our family in Florida. But I’m so grateful that we were only battling a regular kid issue. Kids get sick from time to time. And Lily handled it all with such grace. She’s amazing.