Staring down the barrel of a gun

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

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.

Sunshine and warmth!
What a view – even without all the green and flowers
Crocuses

A decade with Rett Syndrome

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.

Momma best with her cub

Rett Syndrome + Puberty = Yelling

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.

A serene moment… we need more of these.

It’s been a while…

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)

Traveling with your medically complex family member

In the run-up to this trip (and even a few times during it), I’ve been thinking I’m crazy taking my Rett kid to Italy, especially when seizures aren’t under control*. And now here we are, and I know that it was 100% the right thing to do. Don’t get me wrong, it’s not always easy traveling with a person with complex disabilities. But it is well worth the effort if you can make it happen. I’ve listed a few practical tips for those who are considering traveling with their medically complex family member. This is also a helpful list for those traveling with small children.

1. Choose the best airline you can possibly afford (I looked into business class tickets but they were well beyond what I considered to be affordable). We flew Emirates which has a very roomy and accommodating coach class.


2. Book wheelchair support – once we checked in, everything was a breeze – from getting through security at JFK to going through passport control in Milan. No waiting time.

3. Book a direct flight. Minimize the transfers. The last thing you want is getting stranded in Munich airport for 2 days. And the possibility of lost luggage increases exponentially.

4. Pack all medications, supplies and a few changes of clothes in your carry-on. Don’t forget the iPad and charger too, along with a converter for when you arrive.

5. Bring help if you can afford it. We have been fortunate to have a caregiver who is more than willing to travel with us and go along on our crazy adventures (Sure, let’s stop off in Pisa for a quick visit!)

6. Limit the number of hotel or Airbnb transfers. Popping around all over Italy (or wherever you decide to go), moving from hotel to hotel is not something to aspire to on a trip like this. Day trips are great. Packing up your army of supplies every two days to relocate is not. 

7. Drive or rent a car. Train stations can be overwhelming and getting up and down stairs is downright tricky. My daughter can walk but some days are better than others. We chose not to bring her massive adaptive stroller, which would have been impossible to travel with on top of all the other gear we needed to bring. 

8. Research where to stay. We decided to go with an Airbnb because we needed a place that had a washing machine (she produces a lot of laundry) and a bedroom on the main floor.

Go with the flow. Not everything will go according to plan. But oftentimes, that’s where the magic happens!

10 Know how to explain (at a basic level) your child’s disabilities in the local language and always know where the nearest hospital is. Thankfully I speak Italian but I didn’t know a lot of medical terms like seizures or scoliosis so I made sure to learn them. 

Most importantly, live your life. When my brother and sister were planning this trip to Italy to honor our recently deceased mother, I knew that we had to go. Lily wasn’t able to make it to my moms funeral in Florida and I wanted her to be able to take part in this celebration of her grandmother’s life. And I wanted us all to be there with my brother and sister and their families. 

These are important things. And they matter. And I promise you, it is worth the effort. 

Buon viaggo!

*I got the ok from her epliptologist to go and a list of reasons to take her to the ER if needed – thankfully none of it was needed.

A trip to Columbus Circle

Lily’s been talking about going on the subway for a while. The other day, she mentioned that she wanted to go at 11pm with Stephen. 😳

I told her that 11pm was too late (who stays up that late anyway?) and unfortunately Stephen wasn’t able to come but would she want to go with me on a Saturday afternoon?

She was more than happy to oblige.  So we took the train to Columbus Circle, where she helped me find the elevator exit (check out the video). We got out, did some window shopping and had a blast.  

But the trip tuckered her out. It’s been a rough few weeks as we’ve been struggling with seizure management- she’s been averaging @ one a day. 

Even with all the setbacks, none of it stops her from living and laughing. 

She is truly an amazing human being.