Tuesday, April 14, 2009

The Rest of the Story

Remember Paul Harvey's "And now you know...the rest of the story."

Well here is the rest of the story from our Disney trip...

The previous post on this blog and our family blog was all about the fun. This a bit more real.

I have to say that my expectations for the trip were pretty low. I did not know how much Brayden could handle and for that matter how much the other two boys could handle. Six days of parks, lots of walking and not enough sleep. That could be a recipe for a serious case of grouchy and meltdowns. Each child did amazing, they were fantastic including Brayden. He even gave us a few smiles during the week.

Brayden was still vomiting a couple of times a day and we are still not sure why but for the most part it seemed manageable. We just carried more rags with us. He seemed fine after expelling whatever was bothering him (stomach bile and saliva) so we were still at the parks and on the rides!

As I mentioned before, we were able to get special handicap passes for Brayden and our family. This was key for us because we could be on the rides together. Many of the rides had a different entrance for the wheelchairs, sometimes it was the exit. We would wheel Brayden through the exit and many times a passer by would shout at us "HEY! This is the exit!" As if we were trying to cheat in some way past the lines. It feels very offensive to have someone in your face accusing you of trying to cut in line. Easy to ignore at first but after several times it starts to bother you. And how do you respond? Do they really want an explanation?

We quickly learned that the handicap pass was a wonderful blessing because we did not have to wait in the lines (word of advice do not go any where near Orlando during Spring Break time, it is a madhouse!). We only used the handicap pass for the rides that Brayden was actually going on. The other rides, we waited in line just like everyone else. However, I noticed that many groups did not abide by the same guidelines; handicap pass for when the handicap person was with you...others used this as a free pass for bypassing the insane lines and meanwhile the handicap grandmother was back at the hotel relaxing. It did not bother me much until the last day.

We were waiting at the handicap entrance to ride the carousel. A ride that Brayden could go on. We could wheel his chair right in and then unload him to some one's lap, park his chair until the ride was over. We were waiting our turn, watching the carousel go around. Behind us were three young moms with three little girls (none of which were handicap according to them). One mom asked if their girls could come up with our kids to watch the carousel. Of course we said yes. The carousel came to an end and we were ready to spring into action and get everyone on. Well all of a sudden one of the moms pushed right past us saying "Oh I am just getting my daughter" but she went in and called in her friends. The attendant stopped her and she showed him their passes. Then she called he friends through, completely going past us. Meanwhile the carousel is filling up from the regular line. The attendant let us in and I quickly found a horse for Carter and Luke. I looked around for Jeremy and Brayden, I circled around the entire carousel. I realized that Jeremy and Brayden were on the outside. There was not enough time to load Brayden and there was no room left. Boy was I mad, I could not believe that mom pushed her way through us. All of her group was on the ride and ours was split. Her rudeness and complete lack of consideration made my blood boil. There was only a handful of rides that our entire family could ride together and this was one. She pushed right past our children, Brayden in his wheelchair and seemed to have no qualms about it. I wanted to say something but they exited the ride on the opposite side.

After the carousel we headed to the tea cups. Once again, we head to the handicap entrance. There was a short line. Across from our line was another group of moms resting on a bench. They decided to have a conversation about if it is fair for us to be in a different line and get on the rides without waiting in the lines. These women stared and stared at Brayden.

The special handicap lines were nice despite the inconsiderate people. We had the opportunity to talk with other families who had children in a wheelchair. We talked to a couple of people on their Make A Wish. And of course it was nice to not wait in all of the lines and ride together.

Now on to our big Brayden adventure for the week...

A week or so before the trip I noticed Brayden's feeding pump was making a strange noise, kind of like a creaking door when the pump was running. It was still working so I did not think much about it. The first few days in Orlando the feeding pump was not pushing any liquids through the line, not the formula or water. After some tweaking the pump would end up working. Then came Thursday morning, our day for Sea World, a place that Carter has been waiting his whole life to go (that and Africa). We were getting ready for the day in our room. I was packing up Brayden's feeding equipment and I could not get the pump to work. I tried and tried. Turned it off and on, tried new bags...nothing was working. I panicked and in a not so mature moment threw some bags across the room out of frustration. The pump was done.

We immediately called the medical equipment company. They had an office in Orlando! Our local office in Alexandria had the order processed and ready to go in a matter of 15 minutes. A new pump and bags would be delivered shortly! Huge sigh of relief. The feeding pump is the only way that Brayden gets his food and water. We try to give him things in to his stomach but that does not go well. The J-tube part of his tube requires a very, very slow drip and it is close to impossible for us to feed him without the feeding pump.

Well a few hours past, no new pump. Our local office in VA called to check. Nothing. I finally called an office in FL, spoke to three offices and countless automated systems. Nothing. Where is the feeding pump? At this point it is 3:00 p.m. The last food that Brayden received was 7:00 a.m. We were pushing him limits. We were worried, it was after 3:00, most offices close at 5:00 p.m. Jeremy got on the phone and did some "gentle" persuasion with the Orlando distribution office. All of this taking place in the middle of Sea World while trying to have fun with the boys. Jeremy convinced the office to let us pick up the pump at their location because if we did not get it soon, we were going to the ER for Brayden. The Sea World day was cut short (Carter still had a good time). Then we rushed off to the other side of Orlando to pick up the pump. We arrived at 4:54, their office closed at 5:00. They handed us a new pump and supplies. Huge sigh of relief. Thank you Lord.

A few bumps in the road but still an amazing time. We are so grateful to even be able to travel to such a wonderful place. Grateful that Brayden withstood all that was thrown at him from rides to lack of food. The Lord protects us and provides for us. For that we are always grateful.

And that is the rest of the story.


Courtney said...

there's always a "rest of the story", huh? thanks of sharing it. most of us don't like to share that stuff...we just like to share the good stuff. but it helps us to know we're not alone when we hear about the "real" stuff. sounds like you handled it all beautifully!

Leah said...

what a story! yes, and thank you for sharing. i am so amazed and inspired hat you took the trip AND that Brayden did so well! i am not inspired however by some people's lack of tact and empathy. though i'm not much surprised either. that really boils my blood too. it sounds like you did a great job, carrie and thank you again for sharing!

Shannon said...

So glad to hear about the Make-a-Wish families!! I am sorry people are rude and ignorant. I turn into very mouthy mom when people respond that way to Waverly & Oliver. It can get me in trouble sometimes. :)

Mary said...

Sorry you had to experience such rude people. How unfortunate. I can't tell you how many times we had to call our medical supply company while on the road in the middle of Nebraska or other random places. Those Joey pumps definitely don't last. Thank God for cell phones and insurance! I am so happy your family had such a fun trip. It must have been nice to have a break from the routine. We were in Potomac Falls, VA last week and I thought of you and your family.