Tuesday, May 31, 2011

We're back!

The week was crazy, wonderful, exhausting, exhilarating, beautiful.  We got back home on Saturday, earlier than expected, but we were all so tired.  Though it had its rough spots, for the best part the week really was a wish come true for Emily.

I've been too preoccupied to post.  I'm still trying to sort things out in my head.  So much ran through it this week!  So much happened.  So many memories made.  Give Kids the World Village was a wonderful, beautiful and amazing place that I'm having trouble putting into words.  Before I formulate all of that, let me say tonight that I am very grateful to Boston Market, Perkins restaurants, Breyers ice cream, Hasbro toys, Walt Disney World, Universal Studios, Sea World, and the many, many volunteers that help to make up this amazing community.

The story of Give Kids the World can be found here.  I was first told this story while in the pool with other families.  We were enjoying watching all of the different children, some in PVC crafted wheelchairs especially for the water.  It was amazing how many different families were there, yet there was a feeling of kinship and understanding here.  The volunteers come from all different walks of life.  Some are high school students doing their community service projects.  Some are college kids earning credit.  Some are retired folks, occasionally coming from different states to spend their vacations helping these families.  And many are employees of the theme parks.  We had figured that the theme parks may feel we were a burden- getting free tickets should be enough, right?  No, they totally understand that they are giving some children the hope to beat their diseases.  Some children will cherish these memories as they fight long, life-long battles.  And others don't have time for any other wishes.  They know the tolls that having sick children can take on a family- mentally, physically, financially.  These theme park employees would sometimes come up to us and ask us how we were doing, how we were enjoying our stay, and all mentioned how they loved the time that they volunteered there.  Many are still active volunteers.  Others can't fit it in right now but look back fondly.  I cannot begin to express to you how amazing a community this place is.  And they think of everything!

On our first day we walked in to find a toy in our villa.  (They left toys daily for the kids.)  The villa was larger than our house.  The kids bathroom had a jacuzzi and a huge handicap shower. We were given coupons to take to the Star Tower to make "dream pillows" for the kids, and also to place Emily's star.  Since some of these little people lose their fights, they decided to give them a star to place up on the ceiling that would stay forever.  This would always keep a part of them in the village.  I believe they said there are 150,000 stars up in the main area, and they expect the new star tower (only opened 3 weeks ago now) to be full in 6-9 years.  A star for every sick child that will be placed, and with the guidance of a star fairy, always found by the child or their family if the child passes away.  What a beautiful concept!  They want your child's week to be "a week of yes's".  

Though she felt fragile this week, camera shy still due to the steroid weight, and flaring a bit, Emily still managed to have a wonderful week of dreams come true.  We laughed, we made new memories, we had fun, we enjoyed the rides but also the nature around us, the animals, and feeding the animals!  My favorite moment?  Watching my girls feeding the dolphins.  My son was busy pouting because he wanted to go ride a roller coaster, but my girls enjoyed the experience for what it was- an amazing experience and momentary connection with a dolphin.   I wanted to purchase the actual Sea World photos, but with the crowds of people trapping us then moving us along, combined with the drama that my son created, we somehow forgot to go look at them.  This is my consolation prize  :) 

I shall give a real update soon with actual details of the trip.  Let me say now that Gir seriously almost killed herself before we even got into our villa.  She tripped on a bag while trying to exit the van.  I saw her feet in the air flying as she went out the door.  She scared the heck out of me!!!  I was terrified, but she was somehow totally ok.  She was bruised up all over, and she bit her lip but otherwise she was fine.  She was very, very lucky.  I was worried that may set the tone for the week, but it was surprisingly calm and peaceful.  More to come soon  :)

Sunday, May 22, 2011

Leaving in the morning!

After a crazy busy, stressful week, we are finally 99% packed & ready to go.  The time has come.  (And the world didn't even end!  WOOT!)  Emily is EXTREMELY excited.  She was informed on Wednesday when Make A Wish came back to our home that she will be meeting with Rapunzel this week!  She cannot stop thinking about this trip.  We will have a 3 day park hopper pass for any 4 Disney parks, a 2 day pass for Universal & Islands of Adventure, and a one day pass for Sea World.  Unbelievable!  It really has been a miracle for us.  Seeing her so happy & animated and playing with her brother the way they used to play just melts my heart.

It occurred to me this week that Destructo Boy is really the sweetest brother to her.  They were so close before Prednisone.  After, her "roid rage" was mainly directed at him,  thus creating a rift in their relationship.  My boy is so chillin' that he pretty much just shrugged it all off.  He never really yelled at her about being so mean to him; he just took it.  When they go places like doctor's appointments and therapy sessions, Emily almost always gets "treasure box".  DB rarely is allowed to choose, but he just accepts this without complaint.  He needs this trip every bit as much as Emily does.  I believe he was made for her.  I truly do.  He helps care for her- he makes her laugh, takes her commands, follows her orders & wants nothing in return but a playmate & love.  I know that I say it a lot but I am truly so blessed.  I really hope that this is an amazing week for all of the kids.  Lord knows that we have needed a break desperately.  And when we come home?  A few days at work and then off to the hospital for her next IV infusion, with Cub Scout camp the following week.  It looks like it's going to be a crazy summer!  :) I will update when we get back, after things settle down!

Saturday, May 14, 2011

T-8 days!

While I should be floating on cloud 9 thinking about what a fantastic time our family will be having in Disney in a little over a week, I have been grumpy, on edge.  Kevin & I are thinking that it's because we're nervous with having a plan.  Every time we make a plan something goes wrong.  I know this is different... but we still can't get excited about it yet.  It feels very surreal.  Emily is excited, and that's all that really matters  :)  I just can't wait until we're actually there.  That is when I will get excited.  Even Gir feels the same way.  Yeah... could you tell how much we need this???  It just seems too good to be true.  And then the reality of why we're going hits me.   No one ever thinks that they will be on the receiving end of a wish from Make A Wish.   However, it really can change a child's attitude, which helps with recovery.  I can't believe the difference that it has made with Emily.  She wants to do more because she wants to feel better when we're there.  That is awesome.  She is doing pretty well right now.  I worry most when things are running smoothly, like now.  Usually just when we start to get ahead, she'll get an infection and have to increase her steroids again or her arthritis will flare.  Right now she's happier than I've seen in about a year, and she seems to be feeling much better, too! 

Most of the time I think we all do pretty well, considering how much we've had going on.  However, there are always moments.  They sneak up on you when you're not expecting it.  Today was a very busy day.  I got to Gir's high school for her awards ceremony at 7:45 A.M., and to hear her sing the national anthem!  (Boy, was I sooooo proud!!!)  Off to work for 9-5, then the little people had an art show at their school.  They happened to be selling the elementary school yearbooks.  We bought both of the little guys one.  So, they're looking through their books and Emily finds her class.  She sees that they used her pic from September.  You know... the one BEFORE steroids.  On the same page they had random pics from throughout the school year, including one of her on their field trip in December.  She had the before & after on the same page.  She was so happy about the one and so embarrassed about the other.  She said it that way.  We tell her that it doesn't change who she is, that she's still beautiful.  She can feel the stares from people that don't know, or don't understand.  It's so horrible that someone so young should have to feel that.  However, I know that there are worse cases out there.  Even with other Juvenile Dermatomyositis cases- at least Emily responds to treatment.  Some kids still can't walk a year after starting treatment.  Yes, I count our blessings.  Yes, I will probably still be the first one to note the wild flowers are back, or see the way the sun beams through the trees on a foggy morning.  I try to teach them to cherish what is really important, and enjoy the things that God has given us.  Most of the time I think that helps.

We had our Arthritis Walk!!!  That was exciting  :)  What made it really awesome was not feeling alone.  She had our whole family, several people from our Cub Scout family (thanks again to Marie & Chris for coming, and for the donations by the Williams & Viraldi families!)  We had people from other teams that we knew and looked forward to seeing.  Emily was very tired that day thanks to her infusions the day before.  Her Remicade dosage was increased.  Remicade makes her very tired anyway, but the increase made it worse.   The walk was a little bittersweet, too.  I thought back to last year when she was so tired.  We didn't realize it was the myositis setting in.  So much was different then.  Some days I long to be naive again.  However, I can't change it so we accept.  Anyway, I need to accept that it's bedtime.  I'm a glutton for punishment, I think!  :p  I will keep everyone posted on developments!