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

It takes a village

It takes a village – literally – to get this kid places. Trick-or-treating is just one example. Below are a few photos of behind the scenes efforts, and a few cute ones of her thrown in for good measure.  

Lily wanted to love Halloween, and we did get a few smiles from this cool cat. But there was also tears and exhaustion and not having the energy to walk at times.

We are both so lucky to have so many angels on earth helping us, and they came out in droves on Halloween!

So we went trick-or-treating New York City style, up and down the streets of Columbus Avenue and through the cross streets that go all out with decorations (west 68th and 69th Street FYI). It was an exhausting, but mostly fun time and we got entirely too much candy. Come over and help us eat it before we turn to sugar cubes! 

Never-ending attempts for normalcy and fun memories

Advocate like a mother

When so many things are going wrong for my kid, it’s not easy staying positive. Every institution that has been (supposedly) set up to help my kid is failing miserably.  Everything is a battle. Every day there is someone to call or email or visit. Some days I write dozens of emails and scan just as many documents to move things forward for Lily.  Inching forward is more like it.

Thankfully I am not alone. I have an army of people helping me along this battle – from Stephen to Lily’s therapists and doctors, and the other special needs moms – who are in the trenches with me, fighting similar battles, sharing their knowledge, their love and support. But we are outnumbered.

Yet we move forward. With determination and hope. Because we are fighting the good fight, trying to get the most basic of needs for our children met.

The absurdity of the situation (like so many other things going on in this world) baffles me. Here is one such example: We recently saw Lily’s neurologist as she is starting to have episodes that look like seizures. The doctor prescribed a 48-72 hour EEG. While trying to schedule it, I learn that my insurance company will not pay for a prolonged EEG without putting her first through an in-office 30 minute EEG. It is a foregone conclusion that we will not get any answers from this short study; Lily has these episodes maybe once a day. What I do know is that this 30 minute EEG will cause a significant amount of stress for my kid and we’ll have to do it all again a few days later.

For those of you who are unfamiliar with what an EEG entails, here is a quick overview:

  1. Walk into a small, claustrophobic room filled with medical machines and a hospital bed.
  2. Get the kid to lay still while the technician glues 20+ leads on her scalp and then wraps head, which takes about an hour. (Many of you know Lily so you could imagine the herculean effort it takes to keep her still.)
  3. Sit there for 30 minutes to 3 days hooked up to a machine.
  4. The technician (who is often slurping on a smoothie or munching on chips throughout the process and sometimes smells bad) removes the 20+ leads and we go home.
  5. The parent then spends 2-5 hours getting the glue out of the kids scalp.

Could you imagine putting your kid (and yourself) through this twice? The first time for no reason other than to tick a box for the insurance company.  So I’m fighting back, knowing it is unlikely that I will win this battle.

So, I am angry.  And scared.  Because Lily may now be having seizures which is why we are doing an EEG in the first place.

But I am also hopeful.  And proud.  Because through it all, my child shines.  She is not easily deterred. And neither am I.  And I know that – given all these crappy circumstances – we have a lot of great in our life.   And some days, I’m actually able to focus on this and suspend my worries about her future.

One of those days to be grateful for… picking flowers, veggies and picnicking with friends at our country house.

 

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

Trials and Tribulations

There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.

Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.

I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.

In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!

Love,

C & L

Aloha!!

Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.

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.