A Son's Perspective: Orlando Magic

I want to start by expressing my gratitude to I Am ALS and the Orlando Magic organizations—their support played a crucial role in making our trip to Orlando a success. Our family has been lucky to see my brother, Randy, who is a new assistant coach for the Orlando Magic, when the team visits Washington, DC, but the chance to bring our father to Orlando to see Randy in his own element is truly something I am still trying to find the words for. 

My siblings and I grew up in the gym, as our father was a junior college head basketball coach. We, especially my brother Randy, spent countless hours at practices and games, watching our father coach, speak with parents, and even tutor his players at our kitchen table. To now see Randy in his current position feels like a full-circle moment. I am a proud brother, and I know without a doubt our father is proud of his hard work and success.

When the idea of bringing my father to Orlando to see Randy as part of an ALS Awareness event came up, and the event date was confirmed, we immediately started working to understand the requirements for his travel. On the table were secondary and tertiary options such as driving from Baltimore, MD to Orlando or taking a train like Amtrak. In the end, flying seemed like the best option. 

Deciding who was coming to support my father during this trip was easier; luckily, we have a village. Stacy, my father’s long-time caregiver, is our most trusted and supportive caregiver. Without her, this trip would not have been possible. Long-time friends of my father, Howard and Latonda, also provided unique support essential to the success of our trip.

Having flown previously on  Southwest Airlines, my father and I were most familiar with their services and chose them for this flight. The support provided, from customer service to gate services, was truly top tier! In addition to ensuring we had all the proper documentation and identification needed to board, they assisted with booking our flights, made sure my father’s passenger profile reflected the need for wheelchair services at the gate, confirmed that our gate had the necessary wheelchair elevator to transport my father’s chair from the gate to the plane, and arranged for gate services to help transfer my father from his chair to his seat on the plane. The airline was prepared in advance of our arrival, and the attention to detail kept the flight on schedule for all. The gate and flight staff were nothing but supportive during our trip.

Once flights were secured, we turned our focus on hotel and ground transportation arrangements. My father and I both are Marriott award members and have stayed in many of their hotels. The one thing we needed was space, but more importantly, an accessible bathroom. Townplace Suites rooms provided us all this and more. Their suite had a kitchen, two bedrooms and two full bathrooms; one of them being an accessible bathroom. Because of their proximity to Orlando Health Hospital, the hotel is particularly prepared for special accommodation requests from their guests. 

We chose another company we are familiar with, MobilityWorks, for renting a van during our stay. MobilityWorks Orlando provided curbside service for our trips to and from the airport. They stayed in constant communication, with text messages and phone calls before arrival and departure.

The biggest hurdle for us was planning and packing the supplies needed to sustain my dad on a daily basis. It never ceases to amaze me the number of items needed to support my father; this is why it requires multiple people to support him for these types of travel events. Stacey dedicated an entire suitcase for his saline, gauze, medical tape, trachea cleaning supplies, feeding tube care supplies, replacement parts, and last, but not least, the blender we use to puree his food. While most of his supplies could have been procured from any medical supply store when we arrived, we chose to not leave these items to chance and packed items from his supplies at home. The plan was to take twice the quantity of supplies needed to ensure we didn’t run short. The only supplies we didn’t pack were those we knew we could purchase anywhere, including the Gatorade and water used to blend his food and for hydration.

Our final obstacle was the lack of an over-toilet commode in our accessible room. We reached out to the ALS Association in Orlando to request a loaner for our stay, but they only loan equipment to Orlando residents. Fortunately, our organization in Baltimore was able to mail one to us in Orlando, which we returned after our trip. The last piece of equipment we needed was a small space heater, which we purchased while in Orlando. We thought we were coming to "Sunny Florida," but apparently, we brought the Northeast cold with us during our visit!

My dad tells us that being able to share the court with the Magic organization, my brother Randy, and Cristy was a highlight of his journey with ALS. For me personally, having my wife Xiomara there to share in the experience was wonderful, especially as we celebrate 18 years together this summer. She has known my brother Randy since he was ten and has supported both me and my father throughout this journey. Being able to share these moments with the people we love is what keeps my faith intact in the face of my father’s challenges with ALS.