But why? Why do we always go to Disney? And the answer is simple. Disney World has the best and most accommodations for children like Phoebe.
The stroller as a wheelchair tag keeps Phoebe safe. With having hypotonia and falling unexpectedly, her safety is always a top priority. Having this tag allows Phoebe to prevent injury and muscle fatigue by letting her remain in the stroller in the lines to meet the characters and ride the rides. On the rides that have a separate disability entrance, she is able to safely enter the attraction and have access to transfer assistance when it is needed.
The DAS allows us to get a return time, comparable to the standby wait time, for the character or ride. With the return time we are able to wait in an uncrowded area or in air conditioning. With having difficulty regulating her temperature, overheating and spiking temperatures, this pass allows us to help keep Phoebe cool and keep her from overheating. She is able to stay out of the heat and direct sun while still waiting her turn to see her favorite princess or ride her favorite ride.
The DAS also gives us the opportunity to control the crowd size around Phoebe. With her being immunocompromised and us knowing we cannot prevent all encounters with things that could make her sick, we do everything we can to limit exposure without isolating her. This pass gives us that. Instead of standing in an over packed line stuffed full of people, we are able to wait in a more open area, minimizing her contact with germs and pathogens but still being able to enjoy the sites, shops and attractions.
We also follow accommodations we have set in place with the help of her doctors to keep Phoebe as safe and healthy as possible during our trip down to Florida and while we are there.
We normally go during the girls school spring break. Because the summer months in Florida get brutally hot and Phoebe has difficulty regulating her temperature, overheating and spiking temperatures, we cannot attempt to go then. By going in April to mid May, during their spring break, it is warm enough to enjoy some beautiful weather but not too hot that it would make it intolerable and unsafe for Phoebe.
We travel with a diaper bag full of supplies. Supplies we know we will need like all of her medications and letters from her main doctor that itemize her symptoms and direct her care. And supplies we have just in case like a fully stocked first aid kit, ibuprofen and portable fan. The bag stays with us at all times, easily accessible. We also make sure our first order of business entering any Disney property is to locate the first aid station and the fastest routes to get there.
Instead of flying, we take the 17 hour drive down. It is a long and sometimes tedious drive, but in the case of an emergency it is easier to seek treatment being on the road than if we were in the air on a plane. It also helps limit the contact with the germs Phoebe would encounter on the plane.
Going to Disney is the one week out of the year that Phoebe doesn't feel different. Instead, she feels like she is exactly like her sisters. She gets to do everything they do without being told she can't or feeling left behind. It is the one week her limitations don't stand in her way. Disney is a place of magic, where dreams do come true. Especially for Phoebe.
That is why every year we will take our tax return and make the drive down to Florida. Because Phoebe deserves to feel that she is like everyone else, even if it is just for one week out of the year.