Life has been extra busy for us these past few months… we’ve been renovating a home (which included modifications to help make Lily’s day-to-day life easier for us all), packing up, looking for caregivers, managing her ever-evolving health issues and squeezing in fun and laughter whenever we can.
We moved into the new home at the end of last month with massive help from her uncle Matt (thank you Matt!). Technically we are still in New York City but it’s so much quieter and friendlier up here. Lily’s been loving her new home, exploring the new neighborhood, and getting used to her new school commute (gone are the days of living in the building where she goes to school, we now have to drive her in).
Here are a few photos of her most recent adventures – which include her favorite holiday of all – Halloween!
Even after the visit, Lily STILL wants a pet pig!She chose pumpkins and decorations for our new home…Come and visit us soon! (Hopefully by then, all construction will be completed and the permits and ladders will be gone)
I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.
That’s why you’ve not heard from me in a while.
Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.
So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.
The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).
The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.
Hence the appointment with the Rett specialist.
A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:
1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.
2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.
I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.
In these 10 years, she’s beaten so many odds. She’s doing well. But there are still so many things that she can’t do.
I often think about the conversations we would be having if she could talk. I have them with her regardless, searching her face for answers. But what about the conversations she wants to have? The Tobii is great but it is so very limiting. This child has complex thoughts and feelings. I can see it in her eyes. And those thoughts mostly stay trapped in that amazing brain of hers.
And when I say that Lily is doing well, it’s not like when typical kids are doing well. Doing well for her means that she’s not having significant breathing problems, she’s sleeping (albeit with medication), that she’s still able to walk independently, hasn’t been to the ER in a while and is capable of swallowing food. She still needs 24/7 support as she’s unsteady on her feet, her hands don’t function and she’s nonverbal.
And nothing is linear. Not her growth chart. Not her capabilities. Some days her ability to swallow food gets so compromised that we have to purée her meals.
But there’s good news too. She’s getting taller, she’s gained some weight (over 5 pounds this year alone) and she’s progressing academically (even in a fully remote environment). She also continues to be super cool, super funny and silly and super optimistic.
I say to her every day ‘how did I get so lucky to be your mom? To have such a sweet, smart, tenacious kid!’ I am so proud to call her my daughter. Everyone who knows her will tell you that she exudes love and sunshine and acceptance. And she’s busting to see all of you in person — to give giggly hugs and have dance parties and make you read her books.
Hopefully we will get the opportunity to see you at some point this year. I’ll try to send more updates through www.blueberriesandgiggles.com as I’ve been off social media for a few months.
But for now, we celebrate a decade of Lily. Ten years have flown by and I want to make damn sure that the next ten are superior to the last. I wish I could give you a list of things Lily would like for her birthday, but she’s gotten most of the tangible things for Christmas (which was less than two months ago). If you feel compelled to give something, please donate to Rett Syndrome Research Trust as the best gift this kid could get would be a cure. The second best would be something palliative to mitigate her symptoms. Both are being researched right now.
Sending love and health (both physical and mental) to you all.
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:
Walk into a small, claustrophobic room filled with medical machines and a hospital bed.
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.)
Sit there for 30 minutes to 3 days hooked up to a machine.
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.
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.
Last Friday was a pretty big day for us girls. You already caught a glimpse of Wonder Woman and heard that she was having a tough morning. But so many other things happened on Friday. Even though this kid was feeling like crap in the a.m., she still made it to a dentist appointment. She was brave, but man she hates going to the dentist. Who doesn’t?
Then it was to school for super hero day, then PT and afterwards, I took her for a haircut.
She’s been wanting, and needing one for some time. And a few weeks back we had an appointment, but that was the day Lily fell at school and had to get 4 staples to hold her scalp together. Oh, that was a fun day indeed. However, I digress…
As many of you may know her hair is quite a topic of interest. We have had many conversations and even more debates about what she wants to do with it. For a while we were creating a weekly hair menu where she would plot out every hairstyle for each day of the week (see below).
But the debates about her haircut were always the most interesting. She would tell me, incessantly, that she wants bangs and short hair. To which I would reply, ‘short hair in the summer isn’t a great idea’ and wax on as to why. Her response was always quite diplomatic, ‘I can see your point’ she would navigate to on her Tobii (completely independently I must add); not that she agreed with me, but that she understood my reasons why.
In the end, she won. Mainly because the person cutting her hair cut it much shorter than was discussed. But Lily has been so pleased with the result. She told her teacher yesterday that her hair is ‘better and different’. Why yes it is, smart, sweet, stylish child of mine.
blueberriesandgiggles 