Wednesday, August 6, 2014

Make a Wish, Part 4. Family Takeaways

I wanted to wrap up this series with a few notes about exactly what Bodie's wish trip meant for us.

But I am stumped. 

Because it's so hard to put into words what it meant.

Bodie has spent so much of his life in the hospital. Although we have made every effort to give him as "normal" of a life as possible; and by most measures, he leads a typical life, his life includes so much that his peers lives simply do not. 6 daily medications, twice a day. Holter monitors and blood draws. Inpatient stays to change medications. Open freaking heart surgery. Times 5. Cardiac catheterizations. Again, times 5.  Regular appointments with his Pulmonologist, ENT, Cardiologist and Electrophysiologist. 

So, to have something celebrating Bodie and everything he's been through, but not have it be medically focused was HUGE. And humbling. And, just, amazing for us.

Sure, we focused a bit on the medical side of things. That's inevitable with Bodie. Like, on our first night there, when he was so excited after meeting Pluto that he ran off, tripped and face planted, causing a big ole fat lip and hematoma under it. True story. Nurses visit, check.

Or, a few nights in, when he woke up at 5am burning up, shivering and shaking. It was clear he was running a fever, but, for the first trip ever, I had forgotten his thermometer and we were down in Anaheim without any sort of transportation for me to run out. So we called the Disney nurse. He didn't have a thermometer (if you're a benefactor and would like to donate to a worthy cause, apparently, giving thermometers to the Disney's nurses is a good once, since it seems like a given that they'd have them, right???), so we didn't know how high it was. So they opened up the hotel store so that we could grab some Motrin and bring the fever down.

So, we had our moments where we needed to focus on the medical side of things. 

But, really, this trip was about so much more. It was about celebrating this boy, who against all odds, is still here with us, thriving and loving life.
And, our whole family.
Because, really, it wasn't just Bodie that's been through all of this. 
Yes, he's the one with the physical scars.
But, we all bear the emotional scars.
The scars of fear in watching everything Bodie has gone through, of having our world turned upside down, of being separated as a family for months on end. 

So, to have this time, as a family, to focus on one another, to watch our children shriek with joy, to make memories together, to JUST BE, was incredible. To have the weight lifted of the last 5 years, if even just temporarily, was tremendously healing.
Such a gift.
Every ride we went on where this little guy had his hands up, just loving the moment and life, I had to catch my breath. 
I remember thinking "I just want to remember this moment forever." 
Because, really, that's what Make a Wish is all about. 

We let Bodie pick the last ride of the trip. 
He picked the Ferris Wheel (much to my chagrin; as much as I love roller coasters, ferris wheels push me over the edge - the constant stopping, hanging there and just waiting to fall out is just too much for me). 
He chose to sit with me, and Sierra sat with Daddy.
I thought it was so fitting that he chose me for his last ride of his Make a Wish trip.
Bodie and I have spent countless (and I do mean countless) hours together during his medical journey. I have been the primary parent by the bedside, while Dusk kept everything handled at home and made sure Sierra was faring well.

So, as we rode around and around that ferris wheel, my mind spun with images of times spent at Bodie's bedside in the hospital. And then I looked down and saw his bright eyes and eager smile looking up at me and I knew.
 THIS is what Make a Wish is all about.

Thank you, Make a Wish for this extraordinary experience.

We will never forget it. 


1 comment:

  1. I am so happy for you guys! It looks like you all had an awesome time. Hope you all have recovered from your trip.