Back to school for parents of kids and young adults with complex disabilities is an especially difficult time… it’s a reminder of all the milestones missed, it’s stacks of paperwork and countless phone calls trying to get bussing and therapies in place, it’s packing bags of medical and non-medical supplies for school to have on hand, it’s worrying if the teacher will actually believe my kid is smart and worthy of learning, it’s wondering if she’ll be safe and cared for and respected. And it’s trying to snap the requisite cute back to school photo… all while trying to balance the other everyday things that all ‘typical’ parents have to manage.
Thankfully Lily’s first day back was a success and I’m cautiously optimistic that she’ll have a great school year. C’mon 8th grade – be good to my kid.
Maybe it’s time to rename this site. Maybe it’s time to retire my online ramblings (which I know have been few and far between these past few years).
Now that Lily is older, I am constantly struggling with what I can share with the outside world. She’s a teenager now. I want to be respectful of her privacy.
At the same time, this is such an isolating life we are leading and I know other families are struggling in similar ways so not sharing some of our truth seems like holding back from helping others out.
Here’s a hard fact: the teenage years are–by far–harder than anything Rett Syndrome has thrown my way. I never thought anything could top watching my child lose her ability to talk, use her hands purposely and not grow properly. I was most definitely wrong.
And we are just at the beginning of her teenage years. She’s only 13.
Seizures (currently under control with medication but can change in an instant)
Sleep (currently under control with medication but can change in an instant)
GI issues (somewhat under control)
Growth issues
Mood disorders (the medications we tried made things worse)
Creative (scary) responses to common and not so common medications
Communication challenges
Movement issues
Much, much more
All with the backdrop of not having enough family or caregiver support while navigating complex and bureaucratic medical and educational systems. With the biggest elephant in the room being what will her life look like after she ages out of the school system? The to-do lists and advocacy work are endless.
The funny thing about not having enough family support is that–when I think about it–Lily DOES have immediate family nearby (unlike me whose immediate family live in Florida). But she’s been abandoned by her father and his side of the family. Sure they send gifts from time to time. Maybe I get a child support payment once or twice a year. But that’s it. Lily recently asked to spend a week with her dad’s side of the family over the summer which I communicated to her dad recently. Do you know what his response was? NOTHING.
It’s truly heartbreaking. On top of all the challenges my child faces, she also has to deal with abandonment issues.
So, the question is how to find peace and joy with all this heartache, suffering and loss?
For me, the short answer is this: seek out beauty. Sometimes this means going a few blocks over to RIverside Drive to avoid the bustle and noise of Broadway while driving LIly to and from school. This means walking around the Botanical Gardens after a long hospital visit. This means making our home beautiful and tranquil. This means finding so much joy when Lily is happy and giggling. This means having a peaceful dinner with my husband on our back patio.
Another bi-produt of this phase we are in is that traveling with her is not an option. We can’t even take her to restaurants as it’s too overwhelming. But damned if I wasn’t going to make her spring break eventful. Every day I made sure we had an adventure. The first day we went to Untemeyer Gardens where we (randomly!) ran into my Uncle Richard and his lovely wife Archie. The next day, we went to the farm (her favorite destination) and met up with friends there. Both of these activities were hard for her. So I had to think smaller. We ended up spending the rest of the break exploring garden centers in lower Westchester county. It was perfect – a contained, quiet and peaceful place with beautiful flowers as far as the eye could see. Beauty as far as the eye could see.
Even when we’re being chased by the gun that is Rett Syndrome, we still find our way towards beauty.
This is not your typical beginning of the school year update. I don’t have time for nostalgia as we’re playing a thankless game of whack-a-mole and the stakes are terribly high. Where to begin….
Lily started having seizures at the end of May. We’ve been working with her neurologist to find the right medication but it’s a long process of trial and error. Seizures are scary. And they’ve been happening daily. This sucks.
Also, and likely related, she’s been getting easily overwhelmed. It started with sneezing and coughing – she’d break down crying whenever someone made an unfavorable noise in front of her (which curtailed our already limited social engagements) but now she’s been having full blown meltdowns. Daily. Usually in the afternoons. And for no known reason. This sucks too.
And as if those things weren’t enough, the latest result from the orthopedic surgeon show that not only has Lily’s scoliosis progressed, but now one of her legs is growing at a different pace. What. The. Suck.
The Hope? Well the Hope (not sure why my autocorrect keeps capitalizing this word but I like it) is that maybe going back into a familiar routine will help us all move into a new normal with less pain, less screaming, more peace.
And throughout all the hell this child deals with because of Rett syndrome, she still continues to have moments of calm and joy and positivity.
Thankfully, for her first day of 6th grade, she had a good day.
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.
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.
blueberriesandgiggles 