I can go on and on about the incredible time we time we had on our MAW trip. It was just what we needed, a break from hospital visits, doctors’ appointments, hours at therapy and for me a break from cooking and cleaning!
Claire loves animals so we wanted to take her to some where special she could see animals and go on some fast rides. Claire loves the wind in her hair and prefers to be going fast. Disney seemed like the perfect fit, you can go to all the parks, you stay at a special needs resort that caters to every little thing you didn’t even know you needed, and it was wasn’t a long flight away.
Give Kids the World Resort is run completely off donations and volunteers. Its like being in movie, a tiny village filled with parks, fountains, tiny colourful villas, swimming pools, a rideable train, carousel, movie theatre and an ice cream shop opened from 9-9. Some days we didn’t even need to leave, there was so much to do, they really do take such good care of the families that are lucky enough to stay there.
With the help of Marks parents, we were able to go to Universal Studios, Animal Kingdom, Magic Kingdom and the boys headed to Legoland while the girls hit up the outlets.
Claire was so engaged the whole trip, it really energized her in a way we haven’t seen in such a long time. She ate every meal without constant encouragement, she got on her feet more and spent a lot of time in the pool working those tiny muscles.
The best part of our trip was getting to chance to meet another Batten family that we have become very close to. Not long after our kids were diagnosed a beautiful little four-year-old in British Columbia was diagnosed as well. Her mom and I bonded in a way that only two people can when they are going through something no one else can even fathom. Our trips overlapped by a few days and just spending that little bit of time together, gave us such energy and support to keep fighting for our kids. To know your not alone is very empowering and I’m incredibly grateful that we got that opportunity to have our kids together.
We even managed to meet another family from Florida who made the drive over with their four-year-old daughter to have dinner with us. Our kids have such a rare disease and the fact that we had 4 children in the same place was something that does not happen often. It was like we have known each other our whole lives, it was such a nice feeling spending time with people who get it.
The only downside of the trip was how hard it was to adjust to coming home to real life. You are on such an incredible high, with not much to worry about, and then come home and real-life hits you fast.
We did realize that we need to make sure that our kids experience everything they can, while they are still able to. We have no idea how long either of them will have their vision, and whether gene therapy will save it, so we aren’t going to waste time. We will book trips and get them out of the house and let them see everything they can.