Our Spring Break Trip to Las Vegas
And we’re off to Las Vegas for spring break!
Planning/packing for a trip when you have a medically complex child is a LOT. I need a nap just thinking about it 😅
There are so many moving pieces to keep track of when we travel. Not only do we need to ensure we’re on top of all the medications, medical devices, and supplies we need to bring, but we also need to figure out the time conversions for when those medications or treatments need to be administered and plan how we to integrate them into our vacation schedule.
It’s a delicate balance of making sure Soraya is comfortable and supported physically while also allowing some room for flexibility where/when we can so she can fully experience the things she’s so excited to do while we’re here, like seeing the Las Vegas Eiffel Tower.
Thankfully we have two of our amazing sitters along for the ride to help us make it all happen 💪🏾
The First Half of Our Trip
We have found the sidewalks in Las Vegas to be pretty scarce, and it’s been difficult to find on/off ramps when we do find sidewalks.
Unfortunately, that isn’t the only accessibility struggle we’ve had here.
We went to Rainforest Cafe for lunch, and the two main elevators and the service elevator were down. It was time for our reservation, yet we could NOT figure out how to get Soraya to the restaurant. We ended up dividing; as I checked in, Safi and my cousin Tim folded up her wheelchair and took her up an escalator.
Soraya was terrified but took it in stride. It helped that she had Uncle Tim with her.
I will tell you that I was so furious. How could there not be another way for access?
This theme unfortunately continued into dinner, where we were seated at a high-top table. We had to lift Soraya to get her into the seat. We problem solved by using her ventilator as a footrest so she could get a little support. The restaurant did offer to put Soraya at her own small table, and again I thought, how can establishments not just be more inclusive?
While I may be getting fired up about accessibility and inclusivity in this city, the girls are having the best time, and we surely are making some amazing memories.
I’m trying not to be bitter about that moment of her taking the escalator to lunch, especially since this picture came out of it– it’s actually my favorite one taken yesterday. She seems so happy and brave with Uncle Tim. We would not have gotten that picture if the situation didn’t happen!
The Second Half of Our Trip
For our last day in Vegas, we divided up so each child could do everything they wanted. Soraya wanted to shop and visit the Eiffel Tower. This would have been plenty of time to rest before the much anticipated America’s Got Talent Superstar show. We’d purchased a VIP experience and were even going to meet some of the performers!
But after shopping at one store, Soraya said, “Should I stay in the hotel and not go to the Eiffel Tower? My body is really tired and I want to go to America’s Got Talent.”
My heart sank. This was one of THE reasons Soraya wanted to even come to Vegas. For a moment, I wondered if I should make her push through – Would she regret not going? I was SO on the verge of tears. Even though we had a “light” schedule, it wasn’t light enough. I was bombarded with the pressure of trying to make every moment count, no regrets, and just pure anger that she doesn’t have enough energy to do the things she’d wanted.
It was hard, but I shifted to being grateful that she could TELL US and ADVOCATE for what she needed. What a gift to be able to make a decision that was right for her so she could go to what she wanted most. Off we went to get her on her ventilator and a nice bath. I had to let go of my expectations to surrender to hearing Soraya.
That night, American’s Got Talent started the show by asking for volunteers. Yasmeen was the first volunteer to sing to get the show started!
Then, as we were watching the amazing performances, our babysitter, Macey noticed that one of the dancers was someone she went to grade school with! Peyton Bellman was kind enough to meet us after the show.
We were mesmerized by the rapping musician Mervant. He has an audience member pick a random word from a deck of 100s, then he raps about the word the audience member chose.
The word was grateful, which REALLY hit home for all of us. His rap about being grateful for each moment resonated even further.
We were in the front row and he saw Yasmeen and I tear up, so after the show, he introduced himself. We told him about the Faruqui 5 and why we connected so much to his performance. He wrote Soraya a note and we promised to be friends.
I’m so grateful we made it!