Staring down the barrel of a gun

Posted on May 4, 2024 by mommabear0208

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.

Currently we are facing:

Scheduling numerous intensive surgeries (for skeletal issues)
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.

One of our many garden center adventures

Spring is in the air

Posted on March 13, 2024 by mommabear0208

Lily’s been home for the last two days with lethargy and sniffles but the weather has been fantastic. So we’ve been venturing out, a bit north of Riverdale, to Untemeyer Gardens.

It’s a magical experience watching the earth begin to wake up. We are excited to see what this garden looks like once it’s in full bloom. But for now we are happy to experience the quiet beauty of winter turning into spring. And new beginnings. And maybe some hope for a more peaceful future.

What a view – even without all the green and flowers

A decade with Rett Syndrome

Posted on January 24, 2024 by mommabear0208

I started writing a post regarding the 10 things I’ve learned in the 10 years of living with Rett Syndrome. But I was too tired to finish it. And it would not have been an uplifting read.

Instead, I’m sharing a photo of the most incredible human I’ve ever met – my daughter Liliana who was diagnosed with Rett Syndrome exactly 10 years ago today.

If you get a chance, send some positive vibes our way today. We sure could use them.

Rett Syndrome + Puberty = Yelling

Posted on November 28, 2023 by mommabear0208

Why is the above screenshot the only reference I can find online regarding yelling and Rett Syndrome during puberty? It is possible that my researching skills aren’t as exacting as they used to be. But when your child has been yelling/moaning/screaming for 4+ months (oftentimes upwards of hours each day), your cerebral functioning would also be greatly diminished. So don’t judge.

We’ve taken her to all the doctors and done all the tests. They can’t find anything that could cause the yelling. We’ve even tried some psychopharmacological medications but they had such disastrous side effects that we had to stop immediately.

So we are managing as best as we can. But some days… too many days… most days honestly… are full of hours of heart wrenching and awful. My kid. My poor sweet kid.

We aren’t the only Rett family to be going through this. Most of the useful information I get about this topic comes from other moms who are or have been in this situation.

We don’t need sympathy. We don’t need pity. What we need are solutions. And if you’re another Rett parent searching for answers, know that you are not alone. I wish I had something helpful to share. Maybe one day I will.

It’s been a while…

Posted on October 10, 2023 by mommabear0208

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!