Yesterday’s lesson from the trail was flexibility. What a pervasive theme that was for our whole week!
We had quite an impressive showing for our training hike yesterday considering it was Easter. Once again, the commitment of the folks involved is completely unbelievable. When we first got there, I was approached by our Chief Firefighter Darrell, and our trainer/ Grand Canyon expert Tim, with a proposal for a big change. They want to split Anthony’s trek up, which was going to be 10 hours on Monday into two days and have the family stay at the halfway point at Indian Gardens. Now keep in mind, we have a nice cozy cabin at the bottom for Anthony and a huge schematic of folks arranged in certain places that will all have to all be rearranged and we are two weeks away. But considering the week we had, flexibility was in the air and I conceded to the experts who totally have the best interest of my son at heart. So we are now going to go all the way down on Saturday, stay one night at Phantom ranch and head halfway up with a team on Sunday. We will stay the night at Indian Gardens and the rest of the team will come up from the bottom and carry him out on Monday. Considering how brutal I hear the last three miles are, this will still be an impressive feat. I am grateful for our team of experts and no matter how trepidatious they are bringing up change to Mama Bear, I hope they know that I am humbled and beyond grateful for all they are doing for us. And believe me, as inflexible as I may seem sometimes, it’s only because I’m dreading all the work in store to pull it all off. Just ignore me, I will only brood momentarily and then I WILL make it happen!
It was a busy week all the way around. For Anthony’s Daring Adventures, we got hit with a surprise $3,000 fee from the Grand Canyon for filming that we didn’t expect. Chris Castle and his dear friend Mitch at CenterStaging along with some friends from Spyder,came through and covered that cost. That was extraordinary! Spyder is also donating shirts for the crew. Our other wonderful friend Greg and his lovely girlfriend Kelli hosted a wonderful Biking & Silent Auction event and raised another $2500. And the park rangers at the Grand Canyon are working diligently to accommodate our last minutes changes. I just can’t believe how this is coming together.
On a family note, we had some tough news. Anthony’s sleep study came back and even though boys with DMD aren’t expected to have respiratory issues until after they have been off their feet for a while, Anthony is not doing well at night in regards to his breathing due to the strength of his diaphragm. He is going to need a Bipap at night to help him breathe. That will lower his CO2 levels, which are poisoning him. This is why he has been so dizzy and nauseous in the morning. It’s also why we have been struggling with his weight for the last year. He’s just too tired to eat. It’s a heartbreaking milestone in DMD however, the good news is that we are getting the machine and he will be in such better shape for the trip! Thank God for the trip to shift our focus.
The second family news from last week gives us a beautiful example of how Anthony creates a positive ripple effect on so many other lives. Oliver Castle has won 1st place in a NATIONAL contest for his essay on being KIND. The essay is really touching and can be found on my Facebook page. He credits his brother by talking about their relationship “that’s where I got my kindness from”. Oliver has taken what should be a very unfair, difficult situation for a sibling and turned it into an amazing display of grace and character.
So I think this week, the overall lesson for the Castle family was flexibility. Unexpected things will continue to come our way, but as long as we can let go of our expectations and embrace the gifts in our current reality, we will continue to move forward on the trail in a beautiful, courageous way hopefully helping others in our shoes to see..... everything will be OK.
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