Friday, May 13, 2011

Making Memories…

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I have wanted to sit down and write so many times this week, but we have been too busy making memories!  Let me preface this post by saying that I am not sure that I can write in words adequately how we have been feeling,  After coming straight from a very difficult admission to the land where dreams come true, our emotions have been all over the place!  We have truly been blown away by all of the staff and volunteers, affectionately called angels, at Give Kids the World.   They sincerely want to make your visit here extraordinary!

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During our first night we were here “an angel” who was handing out warm cookies and lemonade on our way back to our villa asked us how we were enjoying or time here.  He asked the kids if they knew what the number one rule was.  Megan replied,  “Do you mean the golden rule?”.  He said, “No, I mean the number ONE rule.  The number ONE rule is to… HAVE FUN!”.   Then he asked the kids if they knew what the number TWO rule was?  Megan replied,”umm, no?”.   He replied, “The number TWO rule is to… HAVE MORE FUN!”.

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The facilities at GKTW are absolutely amazing, from the 2 bedroom 2 bath fully equipped villas, to spectacular handicap accessible pools and water park equipped with PVC wheelchairs so that all can enjoy. 

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Beautiful gardens and nature trails with paved paths so that those of us with kids in chairs can enjoy it too.  A  kid’s theater with a new venue every night.  An ice cream parlor open all day for ice cream whenever you would like, with adorable tables and chairs in every restaurant that are kid sized and designed to look like or are made from something sweet.

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Handicap accessible doors on everything,  even all of the public restrooms (I have not had to do the hold the door open with my foot  and spin around backwards to catch it with my backside maneuver all while I push Lucy’s chair in the door; ).

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A kids spa where we have had nails painted, makeup applied, and a few or more airbrush tattoos applied on just about every exposed (yes, I have a few rules this week) body part. 

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A fam favorite has to be the carousel,we have ridden on it at least 50 times, we are being recognized for this around GKTW !

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The carousel is one of only two handicap accessible carousels in the world!  Lucy has her choice of riding either a turtle or a snail, she prefers the snail, she says it goes faster. 

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Oh and the train, they have a little kids train that too is handicap accessible, Lucy’s chair is able to be wheeled right on!  Our little girl love, love, loves trains, without going into detail we have not had the best of luck riding on trains with her wheelchair, but here she can ride in her chair and as many times as her little heart desires!

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Our kids have been spoiled all week, all four of them.  Everyday there is a special surprise waiting for them in the morning, it’s like waking up to Christmas every morning.  Speaking of Christmas, today is Christmas at GKTW.  Every Thursday they celebrate Christmas complete with snow, sleigh rides, and Santa.  The reason for this, some of the kids that are here may not live to see another Christmas.  Our kiddos have been looking forward to Christmas all week, Jack is questioning how they are going to make it snow in 98 degree weather,  it has been  HOT here this week.

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Reality has hit us on many occasions during our vacation of a life time.   Lucy’s pain level and tolerance for things has been excruciating at times.  It has been eye opening to Drew and I as well as the kids, she is not the same as she used to be.   After finally arriving in the Magic Kingdom on Monday around lunchtime, Lucy made it loud and clear that she was most unhappy in the happiest place one earth!  Our other kids could see that she was miserable and all three said with compassion and sincerity that if we had to leave that would be “ok” with them…really, they had only just arrived and were willing to leave to make Lucy happy!  That moment, though obviously not the best moment, will forever be ingrained in my memory.  What child would be willing to leave the Magic Kingdom without having done anything?  We have been blessed with truly remarkable children!

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Disney cast members approached us as Lucy’s screams indeed sounded like we needed to call 911, the members were kind and compassionate allowing us space to do what we needed to do all while trying not to disturb the other guests.  I called Dr. R and without too many words spoken he doubled her already increased morphine dose and told me to give it to her every two vs. every four hours.  I love that he just did this, although I think the sound of my voice and the screams from Lucy in the background helped him with his decision.

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Our time at the Magic Kingdom was better after that.  Lucy was more comfortable and able to go on many rides with her chair.  We went on everything she could possibly go on in Fantasyland and Tomorrow Land.  In Adventure Land and Frontier Land Drew and I divided, he took the older three while I took Lucy to the nurses station to med her and change out her TPN.  An hour later we tried to meet up for the parade and fireworks show; however, that was impossible as crowds had gathered everywhere except around Lucy and I.  I managed to park us right in front of a magnolia tree where we had absolutely no view of the castle, but because of that we had a lot of space around her wheelchair.  Just as the fireworks show began Lucy fell asleep…she missed it, she missed seeing the “pops”, one of the two things she had been talking about seeing for weeks.

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As the music started, I looked over and saw Tinkerbelle flying from the castle and at that moment the tears began flowing.  It was as if at that moment I realized that no matter how how much I want my little girl to see it all, it just might not be possible.

7 comments:

Amanda said...

Your post brought me to tears. I can see that you are experiencing an emoional rollercoaster far greater than any they offer at Disney. Your children sure love their sister and are making lasting memories with her. I pray that she feel no more pain and just soaks up all the love that is obviously around her. God Bless!

Anne Kerr Thomas said...

im so glad you guys are having fun...sad to hear she missed the "pops", but thats ok. have a safe flight home.

love,
Anne

Kristina said...

I'm so glad Lucy was able to make the trip! God bless you all. Make wonderful memories!!

Sonja said...

So glad you and your family had a wonderful time! Your family is in our daily prayers...we found your blog on Liz Eckman's FB profile. We believe in miracles!! :o)

Jennifer said...

I am SO happy for all of you. What an amzing trip for an amazing family. Get home safely. Can't wait to hear all about it at CCF.

Jennifer

Jessica said...

I wish we lived closer so that you'd have other families nearby that know what you are going through. I'm glad that your dr is so very understanding, and liberal with the pain meds. I'm praying your trip has been incredible every day. I will say that starting Eithene on a morphine drip was one of the best things we ever did for her. I wish that there was some way to spare families from this horrible disease, but I'm praying God gives all of us strength for each day.

Carrie said...

I'm so happy to hear that you were able to make some joyous memories on your wonderful trip to the Magic Kingdom/GKTW, in spite of some of the hard parts, like Lucy's intermittently increased pain level and her missing the pops. Those parts are so heart-wrenching. However, it sounds like the marvelous times outweighed the tough moments overall and that's what I was hoping and praying for for you and your family - and that's what I will continue to hope and pray for now that you are back home.