Sprinting a marathon

We have been up here coming on seven weeks. In some ways, it feels like it’s flown by. In others, it seems to drag on. And on.

We are also coming on 7 weeks with no caregiver, full-on homeschooling (which ends up being about 4-7 lessons or therapies a day for Lily) and two full-time jobs that are in the throes of trying to help people through this pandemic. Thankfully we both have some flexibility in our schedules. Stephen is working mornings doing this and I’m working afternoons doing this. As we both manage global teams, our schedules can’t always stick to what we’ve tried to carve out. But we make it a point to participate daily with Lily in her lessons/therapies.

It is more work than any two people should be able to handle or be asked to handle. And as this doesn’t look like it’s ending any time soon, we’ve started to put feelers out there for temporary live-in help.

Don’t get me wrong – we are grateful. Grateful to be spending more time with my two favorite people. Grateful that we are all healthy (or in Lily’s case, healthy-ish), we have jobs, we’ve got a beautiful house to camp out in, and we’ve got a school and an army of therapists who have been working with us from afar to figure out the best way to teach/treat Lily.

But we need help. So I am putting it out there to the universe (i.e., you)… if you know of any college student tired of living at home, wanting to make money and is interested in special needs or maybe you know a therapist or a para-professional or a person who used to be a nanny or caregiver who is looking for a job and a temporary home and wants to spend the next few months living in a private cottage on 2 lovely acres with a swimming pool, taking care of the sweetest, coolest kid in the world, please send them my information so we can talk.

Fingers crossed that the universe will provide.

Take good care.

Love,

C & L and S

A day in the life

Day one of x???

Wild times. Unprecedented times. For everyone.

And I hope you are all taking the necessary precautions. We are. Yesterday we drove up to our house in Connecticut packed with food, clothes, books, computers. Spent the day settling in. It is truly beautiful up here. And to be able to go out, smell the fresh air and see nothing but nature, that is a real gift.

These photos from yesterday depict one of joy and calm. And during some parts of the day, it was true. For others, not so much. Lily really misses school and her friends. I miss going to work, as does Stephen. We were trying to juggle it all yesterday, and without any support. It did not all run smoothly.

I have two immediate concerns – the first is that it has been years since I’ve not had daily support for Lily. She needs a lot of supervision and guidance. She can’t run around unaccompanied or sit there and play with her dolls, or play a game on her iPad or whatever it is that typical 9 year olds do. The other is also related to Lily. It’s been years since she’s not had intensive, consistent therapy. In a typical week she has at least 20 hours of direct treatment – occupational therapy, physical therapy, speech, etc…

To sum it up: I’m most worried about my capacity to care for her WHILE ensuring that she maintains the skills she currently has. And working full time.

Thankfully we’ve got Stephen. We are very lucky girls. And I know that he and I will create a new norm – one that will work for us all. It is not going to be easy. Nor will it always go well. But together we will do our best.

Oh, and then there’s this whole pandemic thing. Health risks, massive disruptions to the community. As someone who has spent the last 8 years living in a state of near-constant panic, who has fought for basic rights, who knows that each day can bring a terribly scary turn of events, I’m empathetic to everyone who is now dealing with these feelings. It is not fun.

But we will get through it.

Sending health and peace of mind and abundance to you all.

Love,

C & L & S

Highlights from a very interesting day in the country…

Summertime, and the living is busy

This kiddo was super excited to start her summer program today. Did you know that kids with Rett Syndrome, or mostly any disability for that matter, need year-round therapies so they don’t regress? So it will be a busy summer of physical therapy, occupational therapy, speech therapy, reading, spelling, math and her favorite: hydrotherapy.

And it will most definitely be a summer filled with blueberries and giggles, and lots of wonderful memories.

Excited for her first day of the summer program

First day of second grade v last day of second grade

Lily’s luau birthday bash

This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. In anticipation of her upcoming Make-A-Wish trip to Hawaii, we celebrated with a luau!

The 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 in the second set of photos) and then the luau at school with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan, followed by dinner at her favorite restaurant. And then we went home, exhausted, full and happy.

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.

 

 

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.

Giving Thanks

Even though our mornings start with me saying “Lily – breathe”  “Scoot forward angel face”  “Stand up – you can do it!” “Keep your feet under you baby girl”  “Walk forward”  “Lily relax your muscles”  “Lily open your mouth sweetie”  “Swallow your food honey”  “Lily you need to eat something before going to school”, they are also filled with so much love and many giggles.

Her struggles continue.  Some of her symptoms are getting worse.  Some are easing up.  But she still manages to put a smile on her face and bravely move forward with her day.  I do my best to follow suit.

I’m grateful that this girl continues to persevere in the face of so much adversity.  A lesser person would crumble.  I’ve crumbled.  But I dust myself off and remember that Lily needs me.  I do not have the luxury of losing my shit completely.  Though I do lose it momentarily, and preferably when she’s not around.

I am her voice (though she’s getting quite fluent with the Tobii), I am her arms, sometimes her legs, oftentimes her nurse, her doctor and always her advocate.  Oh yes, and I’m her mommy.  So we do our best to have as much fun as possible in between (and sometimes during) all those doctors and hospital appointments.

It’s the season of giving.  And my ask to you is this: if you are considering making a charitable donation in the coming weeks, please consider giving to the Rett Syndrome Research Trust.  We are SO very close to a cure; every dollar raised inches us to our goal.  And all of our Rett sweeties and their families could use a miracle right about now.

With Gratitude,

C & L

Writing letters part 2

The other day I rushed home from work because I was so curious as to WHO she wrote her first independent letter to.  And then my heart just melted.

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How cool is this kid?  She navigated through her pages completely independently and not only did she tell me a silly joke, but she told me she was happy!  Goodness I love her so much.

The next day, she wasn’t feeling so well.  She had a stomachache (which is unfortunately a frequent occurrence even though I do my best to stay on top of her digestive issues) and didn’t have a lot of energy at school.  But still.  This kid wanted to write another letter.   And this one was addressed to…