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Showing posts from July, 2013

Reality sinks in

Well, we are back to the grind.

Seriously, not even 30 minutes after we stepped off the plane, the kids were all congested and coughing.  Darn allergies and this desert heat.  They have been sleeping and napping for the past two days!  We played so hard, they are completely wiped out!  I was prepared for this.  We never let a great moment slip by without sucking the life out of it!

It was funny, Spencer said to Sam as we were driving home, "Sam, I'm going to tell you this, the sinking feeling you are having now that your wish is over will only last for about a week and then you'll be okay!"

I had to chuckle at that. Most people love 'coming home' but not us.

We have been full force into getting Spencer ready leave.  The countdown has begun and I am trying to pace my crying out to just a few minutes a day rather than buckets of tears every day!  I want to make sure I have some for the big day!  Just 6 days until that boy is out of here and on his mission.

Give Kids The World...Make A Wish

We are one tired little family!  We got home early this afternoon and jet lag and this dry desert heat has already taken it's toll.   We had to get up at 4am after going to bed last night at almost midnight!  We just couldn't stand to leave Give Kids The World behind!  It is more magical than all those amusement parks put together.

Last night as we pulled into our villa driveway, Spencer said, "Even though this place is mostly for little kids, there is something about it that makes you not want to leave.  I could see me living here.  I am definitely coming back here to volunteer!"

Sam had said earlier in the week, "I just wish I lived in a neighborhood like this where everyone was friendly and happy all the time."

We all wished we had spent more time in the Village.  It was really hard to get in all the parks and all the activities going on at Give Kids The World. That might be easier with little kids but with teenagers who feel like they have been suffoc…

Big adventures continue...

Yesterday, the internet here was so slow it was impossible to get anything uploaded or posted.

We covered Animal Kingdom on Friday and Epcot and tried to get over to Magic Kingdom but ended up in another torrential downpour!  It took us nearly two hours to walk through the rain and get back to the Village.  It was kind of a mess but we made the best of it.

Animal Kingdom was a bit of a slow pace and not too many rides.  I'm not sure any of us would go back there again but it was good to say we saw it. Epcot was fun, they had some really cool, innovative rides.  There was one ride where the boys were able to design their own thrill ride on a computer and then get in a special, two seater ride and experience what they designed!  Pretty cool.   Everything at Magic Kingdom was cancelled due to the rain.  Main Street was packed with people thinking the parade and fireworks would still go on but it didn't.

Today was all sorts of crazy!  We started at Hollywood Studios and then on …

Wet and Wild

Wet and wild was the theme of the day!  It started out wet with me making a fool of myself in front of Mickey Mouse and ended with us being stuck in a torrential downpour 1.25 miles from our car!

This morning, the Disney characters were here at GKTW for private photo shoots with each family.  What a treat!  We headed in to see Mickey Mouse first.  They had professional photographers taking the pictures and a fleet of volunteers each taking our phones to capture the pictures on for us.  It was so cool.

 I don't know what came over me but as the kids were having fun with Mickey, I got so emotional.  It was crazy.  I couldn't stop crying and it started becoming the ugly cry complete with snorting!  I stood quite a ways back from the stage where Mickey and the kids were and well behind the photographers.  When Mickey was finished with the kids, he started walking towards the edge of the stage motioning for me to come to him.  I was still crying like a baby.  Then Mickey pointed to…

Universal Fun

Today was great at Universal Studios and Island Adventures and it was not without its chain of mishaps but before I get to that exciting story...

We had another wonderful morning at Give Kids The World.  We headed down to breakfast and a few of the same volunteers were there from the night before.  The man was really nice during dinner and gave us some great tips for the best rides.  This morning when he saw us walk in, he came over to see if we had any questions about the day's activities.  I asked him if he volunteered everyday here and he said, "No, just everyday this week."  He went on to explain that he is a Pastor at a church in Mobile,
Alabama and he brought 15 of his youth from his congregation down here to volunteer for the week in honor of his son.  He and his wife had one child who passed away at age 4, just last year.  He talked about how much his little boy loved GKTW and Disney World.  Whenever he asked him where he wanted to go, it was always, Give Kids The…


We arrived safe and sound in Orlando!  We were welcomed by the nicest man from Give Kids The World.  He and his wife are from Ohio and volunteer at GKTW.  They use to scoop ice cream but now they do the meet and greet at the airport.

Before we got off the plane, the pilot invited Sam to sit in the cock pit.  He showed him all the instruments and let him 'play' with the controls.  It was so cool!

We met our volunteer as we got off the plane.  He had a cool sign with Sam's name on it.  He loaded up all our bags on a cart and took us to baggage claim then helped us get to our rental car.  He gave me step by step driving instructions to our Villa at Give Kids The World.  I was so nervous about driving by myself.  They gave us a brand new SUV to drive which is much different than my crappy Elantra and so much bigger!

We pulled up to GKTW and were greeted by the nicest people.  They handed Sam a stuffed Mickey Mouse and immediately offered us a free meal catered by Perkins Re…

Disney here we come...

Finally!  The cat's out of the bag!  We had the best surprise party for Sam tonight at his favorite place in the world, iJump.

It has been so hard to lie and keep this a secret from him and he was totally surprised!  I loved it.

There is this very small moment when there is nothing but shear joy and happiness in their eyes and I saw that tonight in Sam.  I feel so much gratitude to Make A Wish for this gift, not the trip, but the smile, the smile that lights up their face.  I don't get to see that very often.  It's magical.  It's a blessing.  I don't care about the trips the fun, the special treatment, I just care about seeing my kids so incredibly happy.

Our Wish Granters Joann and Lori have been so great and the special friendship we have formed over the past 5 years is priceless.  I can't thank them enough.  They did so much to get all this organized with iJump tonight.  Speaking of iJump, they were fabulous!  They gave us a discount and then let the kids…

Hurricane update

Well, just 48 hours until we leave and I have been keeping a close watch on Hurricane Chantal.  She is now just a tropical storm which is good.  I would rather be in a tropical storm than a hurricane... I guess.

I have been watching all the local tv stations in Orlando to see what we are going to be dealing with and for the whole week we are there, it's going to be torrential downpours and thunderstorms. Thank you Chantal.  Apparently once a hurricane is downgraded and hits land, it tends to stall for quite some time, just churning and collecting moisture.   Since I have never been to this area before, I have no idea what to expect.  Will it be a warm rain or a cold rain?  Does the park shut down in the rain?

Who knows but we are up for another great adventure! One thing I know for sure is that my kids love dancing in the rain so we are planning on fun no matter what.  As far as I know, Sam still has no idea we are leaving.  We have a surprise party planned for him tomorrow nigh…

Oh the tangled web...

Don't you love secrets?  You can't hardly keep a secret without a series of lies to go with it!

Sam still has no idea we are leaving for his Wish in just 6 days!  It's a good thing too.  As the ironies of life go, there is a Hurricane set to hit Florida sometime Saturday or Sunday.  I think her name is Chantell.  Anyways, I am seriously hoping that it stays on course and doesn't decide to stall somewhere along the way or pick up force, that way, by the time we get there, things will have settled down some.  As it is, our first few days there are showing thunder, lightening and rain and lower temperatures.  I'm happy about the cooler temps for sure and I don't even care about the rain. I just don't want another hurricane.

This is why it's good Sam doesn't know.  We have slipped up so many times, it's hard to keep all these lies going.  I almost blew it altogether when I was talking about a package I am expecting and hope it arrives before we le…

The Sum of all Grace

I saw these words on an album by Mindy Gledhill, The Sum Of All Grace and since seeing them, I haven't been able to get them out of my mind, especially when things in my life seem less than desirable.

There are days when I just have to shake my head.  Days when I am so fed up I can't stand to even think of living one more day in this mess.  Days when any drop of joy I try to feel is overshadowed by so much anger; anger and resentment that I have do everything by myself; not just the daily mishaps like broken toilets, clogged kitchen sinks, a garage full of stuff that needs to get to the dump but the emotional things as well like never having anyone to just talk to.  No one to hear what I am thinking or feeling. Those things just rattle around in my head.  We are so removed from anything resembling a 'normal' life, we really aren't sure where we belong.  There days when I see no redeeming qualities in myself and I pretty much don't see any in anyone aroun…

Ride For SDS

Have you heard of the bike race called Tour Divide?  It's a mountain bike race that begins in Banff, Alberta, Canada and ends in New Mexico, some 2700 miles!

Well, the race kicked off on June 4th.  There is a man by the name of Eddie Turkaly riding in the race to raise money for Shwachman Diamond Syndrome.  At first, I wasn't sure what Eddie's connection to Shwachman Diamond Syndrome was, it's not like breast cancer where everyone and their dog is raising money for the cause, but then I found out he has a son with Shwachmans.

I've been following his ride since he left.  Last week, his wife posted this update:
        " Eddie made it to Kremling last night. Saddle sores weren't as bothersome as he thought they might be. He is frustrated that he is moving so slowly up the big climbs. I reminded him of the over 1700 miles he's done in the last 2 weeks and that those miles day after day are bound to slow you down a bit. He is really missing his kiddos and…

Surprise, surprise...

Spencer had his appointment with the Rheumatologist this past week and it was no surprise that he has Hypermobility disorder too!  Imagine that.  His level of pain is not as bad as Shelbie's, probably because he has more muscle mass than she does but he still experiences daily, chronic pain.

This diagnosis helps to explain the carotid artery murmur as well.  This visit went much better because we weren't blindsided by the news.  We sort of knew what to expect.  Meh!

I'm not even going to bother taking Sam in.  I already know the boy has it.  He can fail all the same tests that Shelbie and Spencer failed.  Sam has always been able to turn his feet completely sideways and almost facing backwards.

The conversations I have had with several parents who have children with hypermobility disorder are extremely interesting. The similarities in all the symptoms we have SDS, Mito or otherwise are uncanny!  Depending on the doctor and their specialty, the disorder is either grouped …

I Whistle A Happy Tune

Last week, a friend was talking to Shelbie, asking her how she was handling the news of her new diagnosis. Shelbie replied that she was scared a bit. My friend reminded us of a song from the King and I, I Whistle A Happy Tune. The words are perfect for how we have all been feeling lately. A little scared, a little nervous but we try not to let it show.  One of the blessings we have been given is the ability to laugh and to find joy in simple things.  The kids are so good at hiding their fear, I'm not quite as good as they are.  I guess it's different when you are a teenager have a circle of friends who keep you going and keep you active.

As my friend sang a few verses of that song, it has stuck with me all weekend.

 Here's my favorite Muppet, making things all better for us this week.  It's important to keep things in perspective...I love how Grover says, "Oh...It's just a monster"   I need to remember this the next time we get bad news...Oh, it'…