I apologize for the delay in posting about our Spring Break trip to Disneyworld. It has been a whirlwind last couple of weeks and I feel like I am just getting my feet under me.
We had a really rough couple of months leading up to our trip. We made the mistake of telling Nathan about our trip, and before you say we should know better, we do. But there is always that part of us that wants him to be able to get excited the same way all the other kids do. We realized very quickly that Nathan just can’t handle the anticipation. It is physically and mentally hard on him. He was coming home from school every day in full blown meltdown mode. He would scream and hit himself for hours on end which would result in bloody noses and nothing could calm him. It was heart-wrenching to watch. Nothing we did could ease his mind and he could not understand that we would get there eventually. It was truly the storm before the calm. Needless to say up until the night before, I was wondering if we were going to be able to go.
We had been in constant contact with his Psychiatrist and had a plan in place. We had been having to give Ativan for days leading up to the trip to help call him down. It took the edge off a little, but he just needed to get there. Flying has always been hard on Nathan. We gave him an Ativan about 1/2 hour before take off and 2 hours into the flight and he did great!
We headed to the hotel. This time we stayed at the Fort Wilderness Cabins. We thought they would offer a little more privacy than sharing walls with someone and since we were traveling with his nurse, there are only a select few that sleep 5. We got so settled in for the night.
The first day we went to Hollywood Studios and unfortunately Jay was not feeling well, so he went back to the cabin to sleep a little. We went on all the rides, after we hit Star Wars first of course. Once we got Nathan his first lightsaber it was as if his whole body calmed. He just needed his “fix”. We rode Tower of Terror ( he had not been on that since he was 5) , I should also say I stood in line and let the three of them ride while I waited at the bottom for them.😉. We also rode Rock’n Rollercoaster (our favorite) and Toy Story Mania. We had a great day and really enjoyed spending some time together. Nathan met a bunch of princesses and proposed to all, who accepted of course!
Over the next 6 days we went to Epcot (We even ran into another Batten family, which was wonderful to see them), Magic Kingdom and Animal Kingdom. Nathan was truly a champ through the whole trip. We even had one night where we left Danielle (Nathan’s nurse) and Nathan at the cabin and were able to take Madison by ourselves back to Epcot and enjoy some one-on-one time with her. It really was a very nice vacation. We all needed a little getaway and I think this was a perfect way to regroup.
We returned home with 12 new lightsabers (yes we were smart and brought a separate suitcase for his new toys). Since we have been home Nathan has been so much better. We have had some off days but they aren’t the norm right now, and for that we are thankful. There has been a little laughter in the house and that is good.
As soon as we returned, I had to book a very unexpected trip to Tennessee to support dear friends of ours who’s son passed away from Batten Disease. It was a heart breaking time, but was so thankful I was able to be there to represent our family in support of theirs.
Since we returned home we’ve had two palliative care meetings. But that is a whole other story that I will save for another time.
Thank you for loving our family and our little boy.