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.
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.
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.
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!
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.
9 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.
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.
Ah bella Italia – the sweetness of doing nothing (translation of aforementioned title).
There’s an approach to life in Italy that is – in my opinion – worth emulating.
Life moves slower.
People are kinder.
Food tastes better.
The old, the different is appreciated, revered even.
The list goes on.
Though I’ve technically been wearing rose-tinted sunglasses on this trip, I know this country is far from perfect. But there’s something new I’ve noticed about this country to add to the above love list: the Italians are so very accommodating and welcoming to people with different abilities.
I casually picked up on it last summer when I was traveling here solo. I saw many Italian families walking around with their differently abled children – out in the open, taking up space, living their lives.
Being with Lily here this summer brought this to light. She walks into a place and is welcomed with open arms – and even a few kisses. Sometimes it’s a little over the top but what it says to her, to us, is that ‘you are welcome and you matter.’
Other than the occasional tourist (usually American* or British), we aren’t getting stared at or paid any more attention to than anyone else. It is so refreshing.
It’s been a beautiful, often difficult vacation. Traveling with a family member who has disabilities is hard. But she’s been doing mostly great and we’ve been able to make wonderful memories – staying in a magnificent villa in Tuscany and traveling through that magical region with my brother, sister and their families. Then we parted ways and headed north to the lakes region for a few days.
Below are just a few highlights from our adventures. If you want to see more photos, let me know. I’d be happy to oblige!!!
*I yelled at an American family in Volterra the other day to ‘stop staring’. Lily wasn’t being disruptive, just doing her Lily thing. People can be assholes. Don’t be one of them.
blueberriesandgiggles 