Sunday, September 16, 2012

Mickey, Pluto, Lilo and Stich

Jaggy was finally able to meet Mickey on Thursday morning. Because we were driving back on Friday, the day of his birthday, we decided to have breakfast with the characters on Thursday. Sebastien had to be back in town for his Saturday UMDF meeting during which he presented a recap of the mito symposium in D.C. this past June.

We we went to a character breakfast at Ohana's (disney polynesian resort) Breakfast was good. Jaggy got to meet all the characters. Stich kept giving Jaggy kisses on his forehead and at one point you could barely see Jaggy's face which was buried underneath Stich. We had to wake Jaggy in the morning although he slept through the diaper and clothing change and the 10 minute ride there. He did wake up as we got there and was awake for the characters but fell back asleep right after. We were able to get pics with all four characters. It was good that we got there late/last seating because many families had left already and it wasn't super packed. Most families want to eat early so they can beat the crowds at the theme parks.

It definitely was bitter sweet. Seeing all the other kids running around was a constant reminder of Jagger's limitations. Actually it started with the waiter bringing a cup with a straw for Jagger so we had to tell them to take the cup and the third place setting off the table since he cannot eat or drink.

Those other families have no idea how good they have it. Their biggest worry is probably the lines at the theme park or making sure the kids don't get a sunburn or sun poisoning. Our biggest challenge is to make sure Jagger gets all his meds and feedings on time and he gets plenty of fluids and rest. And of course our biggest worry everyday is whether Jagger will have a major crash today that could send him over the edge. It is very hard to explain what our life is like. Only those other families facing similar struggles can really relate. It takes an enormous amount of energy, strength, patience and concentration to care for a child with disabilities and/ or terminal or chronic illness. You can never fully relax, always need to be two steps ahead of everything, anticipate and prepare for multiple scenarios and always have a plan b. It is extremely exhausting both mentally and physically. It is kind of like the 36 hour shifts or so doctors do at the hospital except they get breaks and relax for a few days and we don't. We are "on call" 24/7.

After breakfast we walked around the property a bit but couldn't linger too long because Jaggy needed to eat again (we try not to feed him while we are out moving around unless we have to. Few times we tried it usually ends in vomitting). Jaggy was sleeping in his chair for most of the walk. He actually seems to like it both the walk and his chair.

The resort is very nice. All resorts at Disney/ Orlando seem very nice. The Polynesian resort definitely looked like Hawaii or Tahiti with the tropical flowers and beautiful landscaping. Except it was missing one major ingredient: the ocean;). They did have a nice pool with a water slide.

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