Absolute Magic!


Last week, our family took a break from the recent drama and headed to Disneyworld! None of us had been before, and it exceeded our expectations in every way! Daddy P and I aren’t keen on crowds and dreaded the whole experience, but wanted to get it done before Sister C hit kindergarten and confined us to traveling at peak times! We surprised them at breakfast the day we left, which was a pretty great start to the day!

Here is a short video with some highlights of the trip, thanks to Google.

From the minute we arrived, we were blown away by the exceptional kindness we experienced with every turn. This trip was the first experience taking G’s wheelchair stroller on a bus, and passengers and staff both made us feel comfortable with the process.(It also meant we were first on the bus which was nice!) So many times we met strangers while in line that were so kind and welcoming – a woman I will probably never forget blatantly asked what was wrong with G (which always takes us a bit aback!) and then followed to say her family fostered a boy with cerebral palsy for 10 years and she just has a huge heart for kids with special needs…and apologized for her upfrontness but she loves meeting kids like ours. We rode the train with a dad visiting Magic Kingdom with his 20 something son with Downs Syndrome and they were just so incredibly nice and inspiring.

EPCOT_WRLDSHOW_7618129913Every character we met (Elsa, Anna, Jasmine, Cinderella, Snow White,Tinkerbell, Aurora, Donald Duck, Mickey Mouse, Doc McStuffins, Jake, Sofia, Daisy Duck, Minnie Mouse, Goofy, Pluto…and I probably missed a few!) talked to G without hesitation, even though he was often turned the other way (shy!) and generally not responding. He DID give Elsa a huge smile, and kept trying to give Anna a Mickey sticker which was pretty cute. He was SO excited to see Doc McStuffins, but the minute she would come by he would turn away…it was really cute how excited he was to meet everyone, I only wish they saw it too!

There were so many times Mama C cried watching the pure joy from the two kiddos, but some of the highlights were…

1) realizing we would never wait in a line and would always be front row for shows2016-02-28 17.34.53

2) In a Frozen sing along, Elsa waved directly at Graham from the stage, out of a crowd of hundreds!

3) Watching just HOW incredibly excited G was watching PhilharMagic, one of the shows in Magic Kingdom

4) MK_PFTHBLUEA1CHAR_7617526022 Elsa giving G a kiss in our meet and greet, and carrying on a “conversation” with him2016-02-28 21.13.02

5) Sleeping Beauty inviting G and C to watch the fireworks with her across the room at Cinderella’s castle (where we were dining, naturally). I explained that was sweet, but G can’t walk, and she said no problem, I would love to carry him. I was so touched but also know his floppiness can be hard to handle, so I went over with them. Big Sis sat in Aurora’s lap  and G sat next to her watching the fireworks. It was an incredible experience.

6) G was invited to be in a the finale of the Lion King show at Animal Kingdom. I told them again that he can’t walk, but thank you, and they said, no, we will push him in his stroller if that’s okay. So off he went with an elephant (?) and Big Sis to dance around in the ending parade.

7) How sweet Doc McStuffins was to keep coming back and trying to love on G even though he was so shy every time. This video is of Sofia, so take this reaction and double it for Doc!

STUDIO_HBKEYSTO_7619157426The trip was so touching, we were amazed.  Needless to say, I think Daddy P and Mama C might be suckered into going again sometime. Not for 6 days and not every park (!), but it was a fabulous time for everyone.

Now that the fun is over, G’s ICP (intercranial pressue) monitoring is scheduled for March 22. Today we discussed the surgery (drilling a hole in his skull, inserting a wire, and to keep it “secure”, pushing it out through his skin in the back of his head) and 3-4 day inpatient stay. We check in on Tuesday and will check out Thursday or Friday depending on how things are going. Apparently then we wait 2 weeks to have a follow up with the surgery team to discuss the results. So much waiting, so much trusting, so much loving on that little man. He is one tough dude, and God knows he is making all of us stronger too!!

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