Wednesday, July 24, 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.

It occurred to me that I am not completely ready from a medical stand point to send him off.  This afternoon, we saw our Oncologist and ran some blood work to make sure things are at least stable.  His white count has come down some from being so abnormally high.  It's hard to say if this is a good thing or not.  Since Spencer has chemotaxis, (the white cells he has don't move too well to do their job, those lazy suckers!)  it's really hard to get a complete and accurate picture from a CBC.  It could be that the infection is getting under control or that his body is just giving up trying to mount a response.  There is still a left shift in his counts so something is going on still.

His other counts are hanging in the low normal range.  His platelets were low, quite a bit lower than normal for him but not dangerously low.  I was trying to ignore that fact.  Spencer was looking at the numbers and he said, "Those platelets don't look good, is that okay?"
"Rats, Spencer, you weren't suppose to see that!"

He'll be okay but I sense he is really worried about it.  I'm not sure how to go about talking to him, he rarely shares his real feelings and I usually have to drag things out of him...like me.  He hasn't been feeling well the past two days; lots of nausea and non stop diarrhea so maybe his quietness is due to that.  I finally convinced him to go lay down.  He never, ever takes naps but he really needs one!

I still worry about the bone marrow situation and the fact that it is only functioning at 15%  or there about.  In the fall, if he is having more good days than bad, we will forgo the bone marrow biopsy the doctors are itching to get on him.  We will just have to take it as it comes.

It was a weird feeling to leave our Oncologist's office, knowing that it was the last time I would have the blessing of taking care of my son, being there for blood tests, visits with doctors, making sure he is okay.  He will have to take over his own care and I will only be able to love him and care for him from a distance.  

Well, sure glad I learned to like roller coasters because I'm about to get on another one...

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Monday, July 22, 2013

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 suffocating in life, I couldn't get them to slow down!  My favorite moment of all time was definitely our time with Mickey Mouse at the village.  It was magical and happy.

Sam rode every single ride at Sea World, Animal Kingdom, Epcot, Magic Kingdom, Hollywood studios, Universal Studios, and Island Adventures!  I rode every single ride but about 4 roller coasters that were too much for this girl!  It was a dream come true for him!

This morning as we left, there were raccoons on the driveway, and about a million frogs and crickets keeping time on the dewy grass, lizards sneaking into the bushes and one giant cockroach!  It was a like that scene in Little Mermaid when all the creatures started singing "Kiss the Girl".  It was like they all came out to say goodbye! When we left, we were showered with more gifts including a year of free admission for our family to a hundred amusement parks across the United States.  They presented us a Photo CD of all the pictures they took of us too!  We are also getting sent to us all the pictures that were taken at the parks too!

So, our last day, we decided to spend half the day at Cocoa Beach, about an hour away and then go back to our favorite park- Universal Studios!  We were given a two day pass and it was by far our favorite! For dinner, we went to Hard Rock Cafe at Universal!  They were amazing.  They took our picture with Sam holding an awesome electric guitar, they gave Sam a free meal and then took us to the 'Rock Shop' where they gave us anything we wanted for 50% off.  I was standing in line waiting to pay for the things we picked out and the manager came and said, "There's no need for you to be waiting..."  He called a girl over and opened up a register just for us to check out!  They were so kind!  I was floored by how much they cared!

Here are a couple of my favorite pictures:
Cocoa Beach! 

Face Painting.  We had another torrential thunder and lightening storm yesterday at Universal.  As we were running from overhang to overhang, a lady stopped us and said she noticed our Make A Wish buttons and said she would like to paint the boys' faces at no charge.  The boys were super excited about that...She did a great job! 
Well, that's it!  Such a great trip of amazing family memories! Thank you so much to Make A Wish and all the volunteers and companies who donate to Give Kids The World so that we could take a week off from the hassles of disease.   It means the world...

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Saturday, July 20, 2013

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 to Magic Kingdom.  It rained all afternoon but not the downpour we've experienced before and the rain was a welcome break from the heat.

Hollywood Studios is where I experienced my first serious roller coaster ride.  I've decided that if you ask anyone about what a roller coaster is like, you are going to get a 'fishing story'.  We were headed up to a ride and I asked the guy at the counter what the ride was like and how high the drops were.  He said, "There are no drops, it's just like a slide."
Well then, I decided I would give it a try though something in my mind told me it was not going to be like a slide.

I should have listened to my head because there were two full loops and two twists that we did both frontwards and backwards, once again in the pitch black!  A slide my foot!!  I can't believe that guy straight up lied to me!  Oh well, I survived and the kids were so proud of me for hanging in there with them.  That pretty much sealed my fate for the rest of the day.  They wouldn't let me say 'no' to anything!! Nothing.  I am now handling the roller coasters like an old pro.

Sam has had so much fun!  His favorite thing is to pose for the pictures they snap on each ride.  Since we have the photo pass, we get each and every picture for free!  He has quite the collection of pictures of him on the roller coasters.

Tonight, we made it through Magic Kingdom!  That really is where the magic happens.  What a fun night!  We stayed until they closed down the Monorail that took us back to the parking lot.  We saw two parades and the fireworks.  Just as they were closing up, they had this amazing show that they projected onto the facade of the Magic Kingdom Castle.  It was a montage of all the Disney movies with full orchestra of their theme songs. Another short round of fireworks were set off.

The cool experience for today happened at Magic Kingdom.  We were getting on a roller coaster and the young man escorting us asked us about Sam's wish.  He then told us that he was a Wish child a few years ago and beat brain cancer. It was really neat to hear his story and see the excitement he shared with Sam.

Another cool thing happened yesterday.  It was Christmas here at the Village and we had a full Christmas Dinner spread!  It was delish!  While we were headed over to see Santa and receive our Christmas presents, the kids asked if they could do volunteer stuff at the Village for our last day.  I thought that was a great idea!!  This morning, I went over to Volunteer services to see if there was anything we could do to help out.  I told them that it was my kids' idea and it would make them very happy to be able to spend a couple of hours just helping.  She kindly said they just wanted us to be able to enjoy our time here but invited us back to volunteer for a week.  I would love to, the kids would love to!

Well, here are some highlights of the day.  Shelbie had a bit of rough time.  Just as we were headed from our car, into the park, an SUV hit the foot plate of her wheelchair that she was sitting in.  It jostled her around a bit and she was scared but okay.  During the Electric Parade at Magic Kingdom, a rather large lady was shoving and pushing trying to get through the crowds but lost her balance and ended up falling into Shelbie's lap!  There she sat, trying to wriggle back to her feet!  That was kind of funny.  Other than that, the kids have hung in there. They get exhausted quickly and extremely thirsty but we try to plan a show every hour or so so they can sit down and rest for a bit.  That has worked out well...Okay, now for some pics...
White Rhino- Animal Kingdom

This was cool!  We thought we were going on an Ariel ride but they had us make a detour to hang out in a private photo shoot with Ariel and visit with her.  She was so witty and awesome with the kids.  She had them acting like 'mermen' and mermaids.  She was really funny and really nice!  Shelbie was transformed to a little girl again.  Ariel was always her favorite as she was growing up!  It was a great treat! Thank goodness for professional photographers...much better than this pic taken with my phone. 

The Army guy from Toy Story!  This was a fun shoot too!

Mickey and Minnie- Main Street Parade, Magic Kingdom
Tomorrow is our last day here!  Sam has yet to decide which park we are going to or maybe we will head out to Coco Beach!

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Thursday, July 18, 2013

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.
Sam with Mickey

Spencer with Mickey

Shelbie with Mickey
 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 me and one of the volunteers ushered me back to the stage.  Mickey gave me the biggest hug ever and just kept hugging.  I just couldn't control my emotions.  I felt like a big dork but Mickey was so sweet!  The photographers just kept clicking pictures.  I was up there at least 5 minutes just hugging Mickey.  There is something magical and special about Mickey Mouse and seeing the kids just being 'little' happy kids again!  I will say it has been the best part of the trip!

I didn't notice that there were now at least 6 families lined up waiting and now everyone was crying!  Oh...
Me with Mickey
 After I got a hold of myself, we went into the castle to meet Goofy!  Goofy is just so funny!  He had a great time with the kids.  (These are just pics from my phone, I'm sure the professional ones will look much better)
The kids with Goofy
 At breakfast, we visited with our favorite volunteers again, the ones I've been talking about- Jessica and John David.  He is a Pastor from Alabama.  What a sweet couple!  They gave me a wrist band in memory of their Son, Noah.  They have a website in honor of him and use it to raise money for a host of great organizations.  You should visit it and read their story...It's pretty inspiring and she writes beautifully!
Our favorite volunteers- Jessica and John David

Some of the youth volunteers at breakfast
Today was Sea World day and Aquatica!  Sea World was much more relaxed than Universal yesterday.  We started off with a couple of roller coaster rides then headed to see Shamu.  (Is that how you spell Shamu?)  Since Shelbie is in a wheelchair, we found, what we thought, were great seats just above the first set of bleachers.  It was the Handicapped spot.

One of the workers came up to us and said, "Come with me."
We followed her and she took us right down to the very front row, dead center!!!  Of course she asked first if we were okay in the splash zone and we said 'Yes'.  A couple of the other workers were there and said, "Are you sure?  It's going to be cold water and maybe lots of it!"
"Well, you only live once right? It's just a little salty whale water!"  After I said that, I thought that probably wasn't the funniest thing to say seeing as how we were all wearing Make A Wish pins but one of the elderly workers laughed and said, "I'm not going to argue with that!"

We got wet alright!  Soaking wet!  Drenched!

From there we did more rides and an amazing dolphin show!  I can't believe what they can train dolphins, whales, even parrots and a vulture to do!  They were all part of the dolphin show.  Also at Sea World we got to feed the dolphins.  I didn't get any pictures of the day because we were always getting wet! I didn't dare break out the camera.  The park was great to take some great pictures for us and we will get them all on a CD right after we get home.

When we fed the dolphins, they brought one dolphin right up to lay down directly in front of Samuel!  He was so close we all got to hug the dolphin!  That was cool.

We left Sea World around 3:30 and headed to Aquatica!  I asked someone at the gate of Sea World if I should drive to Aquatica or if it was within walking distance.  She said, "Ya, just walk, it's right across the street."  Where I'm from, 'right across the street' is, right across the street.

We started walking.  And walking....and walking!  It was just over a mile away!  That was okay.  It was a great water park!  This is where you slide down a glass slide, down through a dolphin pool.  They also had a lazy river, a rapids river and two wave pools as well as a sandy beach!  We were only there 2.5 hours because the most wicked storm moved in.  They had to shut down the slides and people were nearly running to get out of the park.

We were just sitting in our lounge chairs watching the people and a guy ran past us, "You need to leave, a storm is coming and it's a bad one... hurry, take cover."  We should have listened to him...

About 20 minutes later, it did get bad and we packed up.  Unfortunately, we had a mile walk ahead of us to get back to the car.  We didn't even make it to the front gate when the clouds came undone and we were soaked!  It wasn't a warm rain either!  We were laughing so hard we could hardly walk!  Spencer was a good sport to push Shelbie in the wheelchair through the rain and all day really!

We made it back to GKTW just 10 minutes before they stopped serving dinner!

Tonight was Christmas in July.  All the kids got a present from Santa and got to sit and visit with him.  We were still waterlogged from the day and left our butt prints in his chair.

All in all, it was a great day!  We had fun getting wet all day!  Here is a word of advice if you go to Sea World...Go on the Antarctica ride before you go the Whale show and sit in the splash zone!  It was slightly uncomfortable being on that ride and dripping wet.  The temperature was nearly freezing.  The workers were wearing winter boots, hats, gloves, down coats and there were live penguins!  We froze to death!!!  But still so much fun.
Tomorrow we hit the big one...Disney World!

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Wednesday, July 17, 2013

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 World!  Now, the father plans to come back here every year to honor his son.  He invited us to do the same.  He said the cool thing about being at GKTW is that you can come back anytime to visit. ANYTIME!  Tomorrow, I am going to see if I can get a picture of him and his wife and some of their youth.  There are so many inspiring stories.

After breakfast, we took Sam's star to the Castle of Miracles for the Star Fairy to place.
Stars cover the Castle of Miracles!  They had to build on a tower to accommodate more stars.  Before we leave, they will give us a map, showing us where in the galaxy Sam's star is! 
 We didn't get to Universal until about 10:30.  Not only did we have a 'Fast Pass' but we had our own escort for each ride!  I couldn't believe it.  We felt horrible being taken to the front of every single line and given the best seat on the ride.  It was crazy!  I went on just about everything at Universal.  They have the coolest 4D rides.  Some of them get pretty wild but I was brave.

So, are you ready for this story.  If you know us, you have to know by now that we seem to attract weird events like Hurricane Sandy during Spencer's wish so, Sam's wish was not without something crazy today!!  I'm talking eerie and crazy!

Things were going great until we got to The Wizarding World of Harry Potter at Island Adventures.  It was a ride that was highly recommended and the line was huge.  People had a 90 minute wait.  Of course, we got the front of the line, boarded our cart of just the 4 of us.  The ride takes off and it's pretty cool.  It's a 4 D ride so not only are you moving and spinning fast but there is 3D movie playing right in front of you and then smoke and splashes of water along with other physical effects.  We were flying and dropping through these towers and caverns and at one point we were tilted sideways and laying practically upside down!  At that very moment...the ride BROKE!!! No joke!  We came to a halt upside down and the power shut down.  It was nearly pitch black.  We were at this part when these enormous, hairy spiders had just been flung in our faces.  Those too were suspended right in our faces and stuck there!

I really wanted to start screaming!  Like really start screaming.  Black, spiders, cold, damp, dead silent except for the four of us and upside down?  Ugh!!  I was hanging the lowest in the cart. What's worse, is the safety bars cover each side of you so we couldn't see each other.  The only thing we could see of each other was our feet.    Being that I am the mom and the one that has to set the example of reason and composure, I stayed as still and as quiet as I could.  Inside, I could feel the panic building and I wanted to rip myself out of that seat and just hasten my death!  Good thing I didn't do that, it might have been a hasty thought.  Anyways, we weren't just stuck in there for a minute or two...nope, 15 minutes!!

When we finally got off the ride, I was feeling so dizzy and kind of sick.  They told us to get back in the cart for a re-ride!  I kindly backed out but the kids wanted to go so they got back on.  Low and behold, it happened again to them!  Twice!! The workers felt bad but I didn't care, I was just glad to be moving on.

From there the boys went to a roller coaster that was also in Harry Potter and just as they got in their seats, it died too!

You would think our bad luck ended at Harry Potter but unfortunately, it happened again in Dr. Seuss land.
The four of us were on a 4D Cat n The Hat ride and it died in the middle.  This time, we were upright and there was plenty of light when it stopped.  Again, we were stranded for 20 minutes!  Some guy kept coming over the intercom, "Please do not panic.  Please do not panic."  

Is it weird that we kept breaking the rides?  Shelbie said we have so much energy that we interfere with the electrical circuitry.  I'm not sure what it is...It took me a good hour to recover from the Harry Potter ride.  Even if we hadn't of been upside down, it still would have been too much for me.

Sam loved the day!  He was on cloud 9 all day.  Here are few pictures from today's fun.
Here we are at Universal.  So much fun!  Glad I brought a hat and skirts, kept things really cool.  

It was like being in the coolest little town ever!


The HULK roller coaster.  The first roller coaster of the day.  As you can see, I sat this one out. 


The heat was manageable today.  It was about 95 degrees but no one was suffering too much.  I had ordered a wheelchair for Shelbie several weeks ago and I am so glad I did.  She could hardly get through the airport when we had to make our connecting flight and the walking we did today was far more than any day in New York for Spencer's wish.  The wheelchair eliminated so much pain for her.

Sam's knee was giving him some problems in the afternoon but no one got sick today!  Probably because we hardly ate all day.  No one was hungry, just thirsty so all we had was lemonade and water.

For dinner we went to the 2nd largest McDonalds in the world.  It was chaotic but the cool part was that they had pizza and bistro sandwiches along with a huge ice cream bar and the largest Playland ever!  They even had two lanes for bowling.

Tomorrow we hit up Sea World and Aquatica!!  They have a dolphin plunge ride where you fly down this waterslide and into the dolphin tank!  Sam is so excited for Sea World!
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Tuesday, July 16, 2013

Overwhelmed!

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 Restaurant.  He directed us to the Gingerbread House where more volunteers helped us through the buffet lines.  They even carried our trays to our little dollhouse sized table and chairs!  It was so cute.  Thousands and thousands of stuffed animals line the dining room.
Give Kids The World

Sam and Mickey in the House of Hearts


From there we went back to the House of Hearts to get our room key.  They took us via golf cart to our villa.  It's literally a two bedroom house! The kids have a giant private bathroom with a jacuzzi tub and huge shower.  There's a full kitchen and the fridge is stocked with soda and treats.  The table was filled with gifts from the gift Fairy.  She comes every day and leaves everyone presents!


The kids headed to a birthday party for the 'Mayor' of GKTW, Mr. Clayton.  There were clowns, dancing, face painting, all you can eat snow cones, ice cream and other activities.  I left to attend an orientation meeting and receive our passes to 7 Parks!! Universal Studios, Disney World, Epcott, Sea World, Aquatica... I can't even remember the rest!  At every park we will have a photographer following us around and a CD of pictures will be given to use of all the pictures they take!  GKTW will also give us an HD camera to use while we are here and then at the end of our trip, they will transfer all the pictures and video onto a CD and DVD.

Orientation was when I got overwhelmed! (for the second time)  There were 5 moms in the meeting.  The volunteer went through all the activities that are available for us and talked about how the Villa came to be.  There are 1500 Volunteers needed a week to run this place!!  Volunteers range in age from 8-98.  They are everywhere and they are so happy and helpful.  It is unbelievable!  I got a little choked up in the meeting.  I just felt like we didn't even deserve all this love and attention.

I looked over to the lady beside me and she was crying too.  It was such a humbling place to be.  All these moms and dads who have sacrificed so much and watched their child suffer through horrible, life changing illnesses.  You could almost feel these moms drop the weight of the world in House of Hearts.  We were all so grateful for the kindness and love of so many people.  It was like nothing I have experienced before.

There are 140 families here.  To walk around these grounds, you can see the scars on some kids that life has left behind.  For others, it's hard to tell what they might be dealing with but one thing you can't miss is the feeling of strength and courage that exists here.  You can feel it!  You can see the tell tale signs in the tired eyes of the parents that life has not been easy and the road has been rough but despite all that, there is joy here.  So much joy and so much happiness!

We went to a comedy show tonight here at the Villa and afterwards, we went for Ice Cream.  Everything is free and all you can eat.  The young man helping us seemed an unlikely volunteer.  I said to him, "What made you want to come here to volunteer?"
I was not expecting his answer.

  "Community Service.  I hated coming here.  It was the worst community service they could have asked me to do but I had no choice."  then, his eyes softened and he said, "Something changed in me after awhile and when I had completed my time, I loved being here.  Now I come three days a week just because I want to."
Oh my gosh, I could hardly keep the tears back.  I said, "I just want to thank you from the bottom of my heart!  I think you are amazing to give of yourself like this when there are a hundred other things you could be doing!  You have made a difference to me and to my children.  Thank you so much!"  I wanted to hug him but that would have been awkward since there was a counter between us, oh and he was a 17 year old boy and a total stranger!
My Boys outside the Gingerbread House

Shrek and Donkey just hanging out


There are no words to express the depth of gratitude I am feeling tonight. We are so blessed and so humbled by all this love. Thank you Make A Wish, for granting us this little break, to feel the joy that we have been so desperately searching for lately!

As you walk in the House of Hearts, this plaque is on the wall.  They live their mission statement perfectly.
It says, "You have got to give of yourself..not money but the essence of yourself.  That is what makes life meaningful."
Henri Landwirth- Founder of Give Kids The World




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Monday, July 15, 2013

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 jump for over an hour and a half instead of just one hour.

Thanks to Sam's friends and their parents for letting them join in the surprise.  Sam has chosen some really great friends and he is blessed to have them.  It was just a fun, fun night.

We leave at 6:00am tomorrow so now the frenzy begins...trying to get everyone packed and the house clean for the couple coming to stay and take care of the dog.  All three kids are beyond excited.

Here are few pics I got of the surprise.

It was pretty hard to make this cake without Sam being around.  I tried to make it look like Mickey was sneaking out of the cake.  Since Sam hates cake, I made it out of Rice Krispie treats.  It was yummy!

Our adventure begins tomorrow.  There are actually 7 parks in Orlando, we have tickets to any 5 of the seven parks Sam wants to go to!  It boggles my mind!

Well, stay tuned...


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Sunday, July 14, 2013

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 night at his favorite location, I Jump.  I hope he will be excited!  I know I am excited for him.   It has been a hard secret to keep that's for sure.

Pics of the party to come...

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Tuesday, July 9, 2013

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 leave.  Sam said, "Leave where?"
"Oh, we are going to G'Ma and G'Pa's next week so we can hang out at the beach one last time before Spencer leaves."
He accepted that.

We are going to surprise him the night before we leave and ambush him with balloons and a really cool Mickey cake.

In the meantime, I found out today that Shelbie has been weaving her own little web of lies.  She finally told me that the past three months, she has been getting sick after she eats!  She was afraid to tell me because she didn't want to have to go to the GI doc.  Looks like her pancreas is acting up again and causing these problems.  I told her she could simply start taking the pancreas meds again.  Our doctor already said he thought she might need to start taking the pills again.  I feel badly that she has been suffering all this time.

Spencer is having a rough week.  He has been sick after every little thing he eats, even the things that never use to cause any problems.  He looks awful.  Even Sam and Shelbie asked him tonight if he was okay.  He has the biggest, darkest circles under his eyes and they are sunken and grey.  I hope we can turn things around quickly.

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Sunday, July 7, 2013

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 around me either. There are days when I am unloving and unlovable and sometimes, I don't really care.

Thankfully for me, I have a Heavenly Father who does love me even when I am not lovable and when I feel like I have nothing left in me to help anyone else, my kids or even myself.  It is His grace, his undeserving favor with me that keeps me going.  His love and patience with me softens the harsh shadows of the long, hard days.

It isn't easy to add up His grace.  It's much easier to see all the unfairness, the people around me with loving husbands, healthy kids, lots of friends, one solid paying job...or even just one trial instead of 50.  There are days when that is all I see but then, I remember how blessed I am and when I see The Sum of His Grace, it's huge!  I have to do better at recognizing these blessings.

I have three beautiful kids who are striving to do the best they can.  I have been able to enjoy them longer than I thought I would.  My trials have blessed me with a better understanding of God and life and depth of love that could not have been gained in any other way.  Some of my biggest fears in life have become my greatest triumphs.  There have been countless blessing, innumerable visits from Angels.  Plans that have worked out perfectly when there was no possible way they could have.  Check books that balance with just five cents to spare, preparations for trials to come.  This last one is a big one.  I have never had to go through a trial that God didn't first spend time preparing me for.  That is Grace, in and of itself.

There are days I wish things could be different, especially for the kids.  I will continue to wish that someday my bank balance will look as high as the credit card balance, that we will stumble upon sunny days more than the rainy ones but if that never happens, I will continue to count on the Sum of All Grace.  
 

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Saturday, July 6, 2013

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 keeps thanking me for supporting him in this effort. He also says he NEVER wants to do it again! I think he is starting to face some of the mental struggles that are inevitable in an undertaking of this magnitude. I reminded him of all the support that is out there on his behalf and he told me that is what got him up yesterday's biggest climb. Keep that energy flowing his way! Thanks so much! He is on the move this morning and expecting to make it to Breckenridge by midday and then pushing on from there after washing his bike shorts. A very good idea I think! stay tuned!"

Her words struck me to the core!  This past year has been tough and even tougher when I feel like I am always being judged for one thing or another.  I have always worn the tough facade, been the rock for my kids but I'm tired.  No one can really understand the kind of tired I am talking about but when I read Eddie's wife reminding him that after 1700 miles, he's bound to be a bit slower and more tired, it all made sense. 

I drew an analogy to Eddie and his mental struggle in this race and the massive undertaking it is to what all this means to me.  
        When we get the diagnosis of chronic illness, we rally. We have hope and we have energy and we are vigilant in keeping our kids as healthy as possible. We make the most of the moments and we are on cruise control and though it isn't easy, we have a kind of energy we didn't have before.

 As we face trial after trial, climb after climb and 1700 miles is behind us, we get tired. We get upset that we don't have the same energy we did starting out and maybe finding a new normal gets harder with each new symptom and diagnosis but hope is not gone. 

We get down on ourselves, people judge us for 'losing faith', 'being negative' and we may even be full of our own version of 'saddle sores'! It gets harder than it use to be. 

It doesn't mean we are giving up. We've been peddling hard in this race of life, giving it all we've got.  There are plenty more mountains and hills to be climbed and we can't give up now.  

 I hope we all have someone who helps us see how far we've come. Someone gentle, who can see the whole forest, not just the trees when we can't. Someone who reminds us that it's okay to slow down a little when things get rough. It's quite normal and healthy actually. It's okay to be reflective and it's okay to be tired and it's okay to take care of ourselves. 

Eddie and his race made me realize that living with a chronic illness is just as much a mental battle as it is a physical one. If you don't keep your head in the game and filter out the chaos and bad news, then you will be done for. 

Sometimes, it just takes a little reminder like this to get back on track.  Go Eddie!!  You can track his progress here.  







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Thursday, July 4, 2013

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 with autoimmune stuff or mitochondrial stuff.  Makes sense.

I have also come to terms with the fact that this is not a new disease or diagnosis.  Just another manifestation of what they already have going on.

The problem with chronic illness is that it's just so chronic and ongoing.  One day, they may feel okay, the next day or even the next minute things have deteriorated. In a disease that is progressing, set backs like this are to be expected.  I just don't enjoy them very much.

I know this may sound twisted but last night, we were reminiscing about the good ol days.  We have seen some pretty dark moments and at times felt buried in problems, hard problems.  As experience after experience was noted and discussed I began to see how far we've come!  WE have come a very long way!!!  I'm surprised that none of us have thrown in the towel and called it a day yet!  We keep going no matter what!  Maybe a bit slower but we keep going.

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Tuesday, July 2, 2013

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's just Shwachmans!




  

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