Category Archives: Awareness raising

Traveling with your medically complex family member

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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.

A trip to Columbus Circle

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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.

Lily’s cake manifestation

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Yesterday Lily came home and was a bit cranky. So Urszula heated up the leftovers from lunch and they sat in front of the Tobii, chatting while she ate. 

Lily immediately went to the baking section and rattled off the following things:

Baking powder

Sugar

Lemons

Cocoa powder

Mixing bowl

Baking dish

Vanilla extract 

Butter

Salt

And every time she mentioned one of these words, I grabbed the item from the kitchen and put it in front of her. It made her so happy and giggly. 

By the time Elaine (Lily’s speech therapist and good friend) arrived, we had a table full of baking stuff so the two of them worked on finding a recipe that fit the above ingredients. And the entire session was about measuring and mixing ingredients – part math, part science. Lily quickly got frustrated with the process as she wanted chocolate lemon cake immediately.

So Elaine and I finished up. I popped the cake in the oven and once it cooled, Lily was so excited to FINALLY eat a piece. It was delicious!!

Unfortunately for Elaine, she had already left by the time the cake was ready and I’m not sure there will be any left for when she comes back on Tuesday. 😆

Here’s the recipe.

And here’s a photo montage from 2016 of Elaine and Lily baking together in our old Brooklyn apartment.

Sixth grade: seizures and screaming and scoliosis and Hope?

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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.

First day of school photo shoot

Practically perfect…

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It’s continued to be a roller coaster these past few days. But hopefully we’re turning a corner. More smiles and less tears. And lots of creativity today.

Today she made art with her hands in school (photo of that forthcoming) and after school she decorated the cover of her school communication book (it’s the book that goes back and forth between home and school so the home teachers and school teachers are connected). After she decorated it, she told Elaine ‘show mom’ in ‘home office’. (I was working from home today). The kid was so proud of her work. And so was I. So creative. #lilypoppins