Disney World

It has been nearly 8 months since we returned from Disney World.  I am almost finished with our family scrapbook, and just today I finished putting together a video of our time and memories. 

For many weeks, months really, even the memory of Disney World had a dark black cloud over it.  What happened there when Daniel had his first blue spell since being on Flolan (outside of when his line broke in October) caught all of us off guard. 

Before that evening, our family had enjoyed 5 wonderful days together at the Disney Parks as a family.  Disney World itself exceeded all expectations we had, and the staff made it as easy for us as possible.  They tagged Daniel's stroller as a wheelchair and gave us a pass so that we would have much less wait time at each ride, knowing that Daniel would not be able to handle long days and long lines.  This was all without me asking...in fact I did not even know to ask! 

Upon entering our first park, the first day we were there, a skywriter had spelled out "Praise Jesus" in the sky.  Brent and I were in awe, as what we were feeling in our hearts was in  thee bright blue sky above us. 

We rode everything!  Daniel did every ride that he could.  He met Pooh and all of his friends.  He met Mickey and all of his pals.  He met Chip N Dale.  Daniel was kissed by every princess.  One of our favorite memories was eating dinner altogether at the Royal Palace.  The looks and excitement on the faces of our girls was priceless.  And the boys all had a good time there as well. 

Then came the evening of November 15th, we were all getting ready to head to "The Very Merry Christmas Party" at the The Magic Kingdom.  We had gotten all of the kiddos ready.  Everyone had on their Christmas hat or ears.  Drew was watching Daniel while Brent ironed his clothes and I took a few minutes to get ready myself.  I had just put my dress on when Drew came running down the hall of our room screaming..."MOM!!! MOM!!!!  DANIEL'S DYING!!!  MOM!!!  HE'S DYING!!" 

I ran to the living room and there was Daniel stiff as a board and blue as a blueberry, covered in vomit and his eyes rolled back in his head.  I screamed for Brent and he took Daniel in his arms while I grabbed the oxygen concentrator and turned it as high as it would go. 

This was when we learned it could not go high enough to help at all.  

I grabbed the phone and dialed 911.  I told them our location and then gave Sam the phone because I needed to help Brent.  I had told Sam just answer whatever questions they ask you.  I then grabbed my cell phone to call the pager for thee team in Denver. 

When the paramedics arrived Daniel was a purplish color and unresponsive.  Once they put the mask with high flow oxygen, his color begin to improve some.  That lasted all of 15 seconds, because then he went into his second PH crisis.  His body became rigid, he was completely blue, face grey, eyes rolled back, heart rate dropping off...to say it was terrible barely begins to describe just how horrific it was. 

And for the first time ever my kids had a front row seat. 

Lizzy was pacing and screaming to the Lord, "Please don't let Daniel die!  PLEASE!"

Abby was softly crying.

Drew and Sam were asking if he would be alright and watching the paramedics. 

As they put Daniel into the back of the ambulance with Brent holding him, I handed my cell phone into the paramedics to talk the team in Denver. 

And then the doors closed and they left.  And I had no phone and no idea if I would see Daniel alive again.

I will never forget Lizzy running into my arms screaming, "Why did the Lord let this happen here mom, Why!?!?"  My heart was screaming the same thing and I through my tears I answered her saying, "I don't know honey, but I know that he is good."   And her little voice said, "I know He is mommy."

After we gathered some of Daniel's things, the Disney people took us to the emergency room where Daniel was taken.  By the time we arrived he had recovered.  He was once again pink, but they had sedated him because he was not happy to be there...

The kids felt much better after they saw that he was okay.  We all did.  And Disney treated them all so well.  Our room was filled with balloons, stuffed animals, autographed photos, games, a CD, candy...and it encouraged their hearts so much.  Lizzy still talks about how terrible the blue spells were, but then how encouraging it was to have the balloons and presents in our hotel room.

That night they transferred Daniel to a Children's hospital in Orlando.  Because Brent is the one who mixes his flolan, he went along with Daniel.  His sister Cindy happened to be in Orlando and so he had some company at the hospital that first night. 

Before we left for Disney World, I had decided the song I would use for our picture video would be "Somewhere Over the Rainbow".  As last fall  this was one of Daniel's favorite songs.  Every time it would come on our ITunes, he would raise his hands for me to pick him up to dance with him. 

This song ended up being the rainbow that the Lord gave to us in the middle of one of our biggest disappointments.  The next morning, a man came into the ICU room that Daniel and Brent were staying in and he was carrying a ukulele.  He started playing and singing "Somewhere over the Rainbow."  Brent started crying.  And he asked him to play it again.  And grace upon grace, God let Brent and I know, through a man playing and singing for children in the hospital, that he was near.  And reminded us of his faithfulness, his goodness, and his love. 

Both of us were so broken at the time, that it has taken months to truly appreciate the amazing gift that was.  I am more in awe of that moment all the time. 

In an imperfect world, I wanted the perfect trip.  Or at least crisis free.  I wanted a 10 day escape.  Instead we had a wonderful first few days, followed by a terrible tragedy, that ended with all of us joyfully back together.  I guess that IS the story of most fairy tales. 

And one day we really will all live "Happily Ever After" because of Jesus.

That being said then, here is the video that contains memories from  our Fairy Tale...