Getting Real About Our Hawaii Trip
It’s time to get real. We had a wonderful Hawaii trip AND there were some hard, sad moments.
We first came to Hawaii in 2022 when Soraya’s Make-a-Wish was to surf. We hoped to surf again this trip and had everything in place to make it happen. Yasmeen, Leena, and nanny Kaytlin would be surfing in Soraya’s honor, and Soraya said she’d like to try. We were ECSTATIC and hopeful! We planned the lesson when we expected her to have the most energy (in the morning of day 2) and reminded her she could change her mind at any point.
Things were looking promising until the morning of. Soraya shared that she knew her body was too weak to surf...and too tired to even leave the hotel room to watch from the beach 💔
I had a flashback of when we flew to Vegas and all Soraya wanted was to see the Eiffel Tower, but at the last minute, she was too tired to go. That was devastating. This time, I was determined not to let this be something that ruined our trip.
I immediately texted my family that she was NOT going and it was even more important for Yasmeen, Leena, and Kaytlin to feel supported as they surfed. The girls looked crushed. Leena quietly told me she was terrified to go surfing but was doing it anyway for Soraya. Yasmeen strongly said she wanted to surf for herself. Both were commendable reasons and my family showed up on the jetty to cheer them on.
It was a bittersweet moment as I sat in bed with Soraya on her ventilator as they rode the waves.
While I was anticipating this might happen, it still stung. Our family is getting better at pivoting to a different perspective when it’s a little harder to find joy. The girls had a blast, Kaytlin surfed for the first time, and my brother and SIL also gave it a shot! So many brave family members tried because Soraya surfed in 2022.
A very special thank you to the Ohana Surf Project for the open invitation, accommodation, and caring for our family out on the water. They even told us Soraya could come anytime that week if she changed her mind ❤️
I’d hoped this was the only event that’d make me sad, but it was just the beginning of seeing the change in Soraya from two years ago…
Everything so different from our last trip to Hawaii. We knew this would be the case, but WOW.
Soraya only left the hotel room for breakfast and dinner most days. This was essentially her experience of the trip. We’d reserved a cabana every day hoping she’d sit there with us, but she never made it there to hang out. She never went swimming despite buying two swimsuits. She bought super lightweight, easy-to-put-on dresses but only wore her PJ sets because it took too much energy to change more than once a day after her shower.
Just this summer, she went swimming while on vacation in Tennessee; now she was surrounded by water and couldn’t. This spring in Vegas, she wore new outfits daily; now she didn’t have the energy. We definitely felt this loss.
Soraya being in the room most of the time changed the dynamics of our trip. I realized we could be resentful if we looked only at the efforts to get to Hawaii and compared them to our expected outcome. I could’ve easily focused on the financial cost, the efforts of packing meds, setting up vents, new clothes that weren’t worn, etc. But there are so many factors that aren’t as easy to calculate. Soraya wasn’t miserable in her hotel room. She was so fatigued, but she was HAPPY.
She required less as-needed pain meds than she has in months. There were moments at meals when I saw pure JOY in her face just being with family. She laughed, told jokes, held hands, snuggled... all while surrounded by beautiful scenery.
We still had to push for things WE (as a family) wanted to do, like meals together. Breakfast was easier for her to get to, but dinner took some coaxing. She would leave as soon as she was done eating to go to bed. We also pushed her for family pictures as her facial muscles now get tired from smiling. While I hate pushing Soraya, the meals and photos are both things that ended up bringing her AND the family cherished memories.
BIG PICTURE wins of this trip that are BIGGER than one person:
My 84-year-old father was brave enough to travel since getting a pacemaker BECAUSE we were taking all Soraya’s gear
My aunt with early dementia and Parkinson’s joined us
We had some first-time surfers thanks to the ripple of our Make-A-Wish trip
We traveled with extended family we hadn’t before
Yasmeen and Leena had incredible individual experiences that were unique from Soraya
We met Soraya where she was without centering the trip around her
Another win was using The Conversation Project’s conversation starter guide... more on that coming up!