We woke up early and immediately checked to see if our friend, the rattlesnake was still asleep in our campground. He was….obviously comfortable being with us. Who could blame him? Such a great group of folks! Chris made us all coffee in his one cup backpack maker which luckily took forever. I woke up wanting the day to last forever. We sat and drank coffee as the deer stood right next to us eating and wandering comfortably through our tents. Just peace and love all around…
Around 6:30 we looked over and there were Tina and Tim coming into camp. We knew they were coming down from the top early and we knew they hiked very fast but I was hoping for a later start. It’s been a delicate balance between resting and enjoying the moments and beating the heat to be considerate of the carriers. There were a couple times I had to stand my ground and slow everyone down to take it in. These are very mission driven folks who know how to get the job done. I am so grateful for that but on this particular morning, I really didn’t want to leave!
The crew from the top helped us all pack up our tents and gear. Just like the rest of the trip, I looked around and everything was done already. I was really wishing I could take them all home with me! I love the feel during camping when you all wake up together and gather in the crisp morning air to brush your teeth and wash your face. You can hear the laughter and camaraderie throughout the camp. Such a beautiful sense of community; you can tell I’m a total hippy at heart. I would live this way permanently if I could.
Anthony was excited to get started and so was the crew. We only had 4.6 miles to the top but there would be a 3,000 foot elevation gain. I was so grateful that I listened to Tim and Darrell when they insisted we break the trip up into two days. This is just another example of how we could have never done any of this without working as a team (a concept that I really understood on a deeper level after this trip). Doug left a half hour early so he could take his time in case his knee or foot acted up assuring he didn’t slow everyone down. Another example of how we all thought collectively about the end goal instead of our individual needs. I would miss him being with us but glad he was being safe.
As we left the camp, DeeDee, Oliver and I went ahead a few minutes as well since the team who was carrying was fresh and we knew they would go fast. Yesterday, after getting us up to Indian Garden’s, the firefighters had to hike back down. They would spend the night at the bottom, pack up camp, and get the gear to the mules by the cut off time and then hike up to Indian Gardens to help carry this morning. That would put them at a total of almost 10 miles each day. We planned on leaving a half hour before they were expected to arrive at IG knowing they would catch up since they weren’t carrying Anthony. What I didn’t think of was all the gear we used to camp at Indian Gardens. The team that came from above packed it up into 4 big backpacks and since they did it so efficiently, I forgot to grab a couple of the packs. It’s amazing I could forget such an important detail considering it was on all my 15 different spread sheets. But I was so excited and things looked so neatly tied up at camp, I completely forgot!
The hike up was amazing. I don’t know where the strength came from but I was not tired at all. I powered right up everything chatting it up with Tina as we went. There was so much happiness and energy in the air it was infectious. As people passed me and Tina (who were ahead) going down, I would tell folks to say Hi to Anthony. I thought he would get a kick out of everyone knowing his name. Come to find out, they had all already heard he was in the canyon and were looking forward to meeting him. He was a total celeb already! So every few moments you would hear applause, cheering and yelling from below by every a group who met up with him. It sent a warm rush through my heart and made me well up each time. Oliver was doing a great job staying in the front of the pack. Chris was doing his best to hide the incredible pain he was now in. Tina rubbed some numbing lotion on his knee and we continued to load him up with salt tabs and motrin to get him through it. He refused to complain but I could see the concern on DeeDee’s face as we trekked up to the 3 mile house. He used a camera stand as a hiking stick and hobbled as we went with a huge smile on his face every time he looked at his sons.
By the time we got to the mile and half stop, I was very concerned that the firefighters hadn’t caught up yet. We were getting so close and I didn’t want to come out without them. We ran into Doug’s sister Dani who had hiked down from the top and asked her to continue down to the firefighter’s to tell them we were waiting. We kept making our breaks longer since we were coming out a lot sooner than expected. I know people at the top expected a lot later of a time as well. Dani came back up to us and said they told us to go ahead without them. They told her to tell us “It wasn’t about them”. I disagreed and decided we were definitely waiting. Tim and Tina decided to “run” down (because that’s what our canyon trainers do, run up and down the canyon) to see what was going on. Tim came up and reported that we had accidentally left all the packs for them to carry so it really affected their time up. I felt awful! I couldn’t believe I forgot! No wonder I was going so fast. I was missing the pack I had planned on carrying! Where was my head? Uggh!
In spite of the extra weight, we watched as they all climbed up the steep grade on their 8 or 9th mile with big smiles on their faces as they saw Anthony. I started to apologize to Darrell and he quickly shushed me saying it wasn’t about that. They were here to make it all happen and didn’t care which jobs they got. It’s ridiculous how selfless EVERYONE was on this trip! I have never in my life ever seen anything like it! Anthony’s daring adventure truly highlighted the most beautiful part of humanity at almost every moment of the trip.
Climbing the last mile was extraordinary. My heart pounded, my legs ached and my soul soared. I was speechless yet full of love, hope, humility and gratitude in a way like never before. DeeDee and I held hands as we neared the top. Everyone we passed cheered and stepped out of our way. I could hear various team members’ voices behind me making comments such as “here we go everyone, this is incredible, we love you Anthony, thank you everyone!” At the last tunnel we agreed to stop and let Oliver carry him in. We put AC down and all took a moment to hug each other. Oliver picked him up and began the steps up the last part. We looked up and saw the rim completely lined with signs and cheering folks. I can’t explain the feeling inside. It was so incredible. Not just the adoration for my sons, and the team, but all of it. The whole meaning passed through my heart and mind at that moment. We weren’t doing this just for Anthony.
In DMD, it seems to me that one of the top tough milestones is when your son transitions off his feet. There’s something that happens to all the hope you had when they were young and thought you could beat this thing. You feel robbed, raped almost. Something was just taken from you without your permission; something you spent years fighting and trying to stop. I felt violated and defeated. I think so many other mothers, fathers and siblings feel the same. I can't imagine what the boys feel. Even though they are sad, the boys themselves usually seems to be the bravest and handle it the best. Yet to have this amazing adventure coincide with Anthony going off his feet, was the most incredibly timed gift I could have received. Being able to focus for the last 6 months on what he could do, instead of what he couldn’t, changed this time of our lives forever. As I heard the cheers from the top, I hoped in some small way we changed that for others watching as well. As I have said before, Duchenne can take their bodies against our will, but it CAN NOT have their spirits. And as I felt all the love from everywhere at that moment coming out of the canyon, I was reminded that we do not stand alone. I felt one with so many. It was a moment that was stronger and more powerful than the tough moments in DMD will ever be.
I saw Doug there with a sign and tears in his eyes. He was the first out of the canyon and a reminder of the daily support we are fortunate enough to have. I was filled with gratitude and respect. His mother, Nana, immediately shoved chocolate in my mouth (my favorite). And we all began to hug and cry with everyone. All these folks who had worked tirelessly, carrying Anthony all those miles (including all the months of training), setting up and tearing down camps, donated money, did all this selflessly. And they were thanking US! I had no words for how grateful I was for THEM and here they were thanking us for the gift they received. That was an amazing life lesson to me, one who struggles to share my burdens. Now I understand the truth, I don’t just share the burden when I let someone in to help, I share the gift.
Unbeknownst to me, Ben, Rick and Tony were still climbing up since they stayed behind to make sure everything got on the mules safely. I wish I would have known I would have waited for team as well. But in the same spirit as everyone else, when they got out they made it clear they were just there to serve.
Linda, Carol, Vickie and Mary were in charge of base camp. They had the most scrumptious and amazing lunch ready for us to celebrate. We all sat around the Mather Campground eating and talking and nursing our bodies. Many families who all came up to support us all worked together to take care of everything so we could sit and bask in our accomplishment. The kids ran around the forest having a blast. Greg gave us two signed framed photograph’s (one for both houses). They had everyone’s signatures and well wishes on the matting. My favorite was Oliver who wrote “Anthony, I did not know I could love you even more”. That just killed me.
For hours, we told stories and hobbled around the camp eating, talking and hugging. It was a beautiful day…. A really beautiful day. I have no idea how I will ever be able to thank everyone that made this happen. I can only hope that the love they got from giving filled a part of their heart they will carry with them. I know these “lessons from the trail” I have learned through this journey, have changed me profoundly, forever.
Wednesday, May 21, 2014
Wednesday, May 14, 2014
Day 2 in the Canyon…. May 4th, 2014
I hardly slept again last night. I hooked up Anthony’s Bipap machine since he had showed signs of exhaustion on the way down. I slept really hard for half the night and then woke up again. He was so tired he didn’t move all night or try to take his mask off. I watched the numbers in fascination as he went into a deep rem. I could tell because the numbers of breaths he took went from 19 to 11 and I saw the machine kick in and bring him back up. He woke up at 5am smiling and staring at me. He slid the mask up, looked over at me and said, “Mom, I’m ready to get up, I feel great!”
We had to make breakfast by 6:30 so I got up and started packing up. Dee Dee and I needed to separate the gear and pack what was going up to Indian Gardens with us and what was going on the mules tomorrow from Phantom Ranch to the Rim. Last night, on one of our treks around camp getting organized we ran into Darrell and the Firefighters and mentioned that we were overwhelmed trying to figure out how to get the gear into packs for Indian Gardens. Well, with these guys…if you even mention a need, they are five steps ahead of us making it happen. They had to have been way more tired than we were after doing all we had done AND carrying Anthony, but sure enough there were all 5 backpacks packed with all the gear, ready to go! This is how it went. Every time there was the slightest dilemma, it was solved instantly by someone (or everyone) immediately stepping up. That’s been one of the greatest parts, all these amazing accomplished experts and not ONE ego anywhere. I have learned so much about team work.
The breakfast in the Catina was amazing. The people that worked there told stories about the canyon while the 40 folks ate family style. Many of them were strangers but they all knew who we were and wished us luck on our journey back up. Back at the campsite, Tony cooked breakfast for all the firefighters. They elected to hike us halfway up today to Indian Gardens (with all that gear) and then hike back down solely based on what was best for Anthony. They only cared about breaking up that long day and not the fact that they would be doing double miles.
The hike up was amazing. I was so worried about getting up the corkscrew especially since I was carrying one of the big packs, but I found strength I had no idea I had and trudged right up it. At one point, Dee Dee and I were hiking ahead and we crossed a stream. I slipped and felt instant relief as I caught myself. A half a second later I realized I had not taken the weight and size of my huge pack into consideration as I did my “graceful” recovery move and the pack went right over my head sending me into the creek face first. I had a huge goose egg instantly form on my leg but couldn’t stop laughing. I knew I was fine and just didn’t care. I dipped my bandana in the freezing creek, tied it to my leg and off we went chuckling.
We made record time to Indian Gardens and I was so happy that we decided to listen to our canyon expert’s advice. Now we had most of the day to relax and enjoy this beautiful camp. Everyone nursed their knees and muscles with ice and set up camp.
Tina, Tim, Greg, and Nate and his wife came down from the top to bring food and make sure we were okay and see if we needed any help getting settled. I think Brett and Kristen were there too but I can’t remember because it seemed they were all with us the whole time. They just kept disappearing and then magically appearing when we needed them. I think it's seriously possible that they may be real actual angels. I later found out Bob, from the Gilbert Fire Department, also had the flu and was on top trying to recover as well. Ranger Jeff showed us around and helped us pick the best camp spots. Since we were only allowed to take up so much space in each location in the canyon, the Firefighters made sure we were all settled and took off back down to Phantom Ranch to stay the night (10 miles for the second day in a row for them).
That afternoon, we all relaxed and hung out. Chris slept on the ground on his sleeping bag while the boys lay with Dee. She read out loud to them from a book titled “Deaths in the Grand Canyon”. We found the book in a little woodshack "library" on the campground. They loved that! Doug and I organized tents and dinner and walked to the creek to soak our feet. Later, Nathan (13), Jeremy’s the documentary producer’s son, took AC in his chair with Oliver and messed around in the woods like boys should. Deer randomly wandered through our camp and I was about as peaceful and happy as a person could be.
That evening after our dinner of tortilla’s, turkey and cheese, we decided to hike out to the point to watch the sunset. I was so tired I secretly didn’t want to go, but Anthony did so I wasn’t going to say no. I’m willing to bet I was not the only one feeling that way. Since we had no carriers, we the family, carried him. It was a much rockier trail than we thought and I felt very exhausted. Ryan the videographer for the documentary went and helped to carry and so did Jackson (Anthony’s caregiver). Dee Dee needed to remind Ranger Jeff that women were just as capable as the men when he got a little nervous from the exposure and began to question her. Jeff was new and hadn’t learned what we all affectionately already knew, don’t mess with the Deeders! She’s a warrior! Beyond grateful she’s on my parenting team.
The point was exquisitely beautiful with an expansive view. I sat AC right on the edge and let him sit there looking down to the Colorado River. Looking out for miles below, I can say this: if there is ever a doubt about the existence of God, go sit there. Things will get clear very quickly. At least they did for me. Very simple …and very clear.
When we got back to camp it was dark. My knee had suddenly tweaked on the way back and I could barely walk. As we got back into camp, we met up with our friend Greg who had “run” back up to the top and back down (15 miles in one day) to bring Chris a much needed beer. I don’t think Chris has ever been so grateful for a cold one. As we got into camp, Doug met us and warned us that a rattlesnake had curled up in our camp and looked as if he had decided to camp there for the evening. Ranger Jeff informed us that he was not allowed to move it since we were actually in the snake’s home. Doug had borrowed some additional tents from the ranger station just in case those who were planning to sleep out under the stars change their mind…and they all did. I was so tired I didn’t even care (and I hate snakes). I zipped up my tent; put on Anthony’s battery operated Bipap, and went to sleep with my throbbing knee and my peaceful soul. I have never felt as safe in the world as I did that night.
We had to make breakfast by 6:30 so I got up and started packing up. Dee Dee and I needed to separate the gear and pack what was going up to Indian Gardens with us and what was going on the mules tomorrow from Phantom Ranch to the Rim. Last night, on one of our treks around camp getting organized we ran into Darrell and the Firefighters and mentioned that we were overwhelmed trying to figure out how to get the gear into packs for Indian Gardens. Well, with these guys…if you even mention a need, they are five steps ahead of us making it happen. They had to have been way more tired than we were after doing all we had done AND carrying Anthony, but sure enough there were all 5 backpacks packed with all the gear, ready to go! This is how it went. Every time there was the slightest dilemma, it was solved instantly by someone (or everyone) immediately stepping up. That’s been one of the greatest parts, all these amazing accomplished experts and not ONE ego anywhere. I have learned so much about team work.
The breakfast in the Catina was amazing. The people that worked there told stories about the canyon while the 40 folks ate family style. Many of them were strangers but they all knew who we were and wished us luck on our journey back up. Back at the campsite, Tony cooked breakfast for all the firefighters. They elected to hike us halfway up today to Indian Gardens (with all that gear) and then hike back down solely based on what was best for Anthony. They only cared about breaking up that long day and not the fact that they would be doing double miles.
The hike up was amazing. I was so worried about getting up the corkscrew especially since I was carrying one of the big packs, but I found strength I had no idea I had and trudged right up it. At one point, Dee Dee and I were hiking ahead and we crossed a stream. I slipped and felt instant relief as I caught myself. A half a second later I realized I had not taken the weight and size of my huge pack into consideration as I did my “graceful” recovery move and the pack went right over my head sending me into the creek face first. I had a huge goose egg instantly form on my leg but couldn’t stop laughing. I knew I was fine and just didn’t care. I dipped my bandana in the freezing creek, tied it to my leg and off we went chuckling.
We made record time to Indian Gardens and I was so happy that we decided to listen to our canyon expert’s advice. Now we had most of the day to relax and enjoy this beautiful camp. Everyone nursed their knees and muscles with ice and set up camp.
Tina, Tim, Greg, and Nate and his wife came down from the top to bring food and make sure we were okay and see if we needed any help getting settled. I think Brett and Kristen were there too but I can’t remember because it seemed they were all with us the whole time. They just kept disappearing and then magically appearing when we needed them. I think it's seriously possible that they may be real actual angels. I later found out Bob, from the Gilbert Fire Department, also had the flu and was on top trying to recover as well. Ranger Jeff showed us around and helped us pick the best camp spots. Since we were only allowed to take up so much space in each location in the canyon, the Firefighters made sure we were all settled and took off back down to Phantom Ranch to stay the night (10 miles for the second day in a row for them).
That afternoon, we all relaxed and hung out. Chris slept on the ground on his sleeping bag while the boys lay with Dee. She read out loud to them from a book titled “Deaths in the Grand Canyon”. We found the book in a little woodshack "library" on the campground. They loved that! Doug and I organized tents and dinner and walked to the creek to soak our feet. Later, Nathan (13), Jeremy’s the documentary producer’s son, took AC in his chair with Oliver and messed around in the woods like boys should. Deer randomly wandered through our camp and I was about as peaceful and happy as a person could be.
That evening after our dinner of tortilla’s, turkey and cheese, we decided to hike out to the point to watch the sunset. I was so tired I secretly didn’t want to go, but Anthony did so I wasn’t going to say no. I’m willing to bet I was not the only one feeling that way. Since we had no carriers, we the family, carried him. It was a much rockier trail than we thought and I felt very exhausted. Ryan the videographer for the documentary went and helped to carry and so did Jackson (Anthony’s caregiver). Dee Dee needed to remind Ranger Jeff that women were just as capable as the men when he got a little nervous from the exposure and began to question her. Jeff was new and hadn’t learned what we all affectionately already knew, don’t mess with the Deeders! She’s a warrior! Beyond grateful she’s on my parenting team.
The point was exquisitely beautiful with an expansive view. I sat AC right on the edge and let him sit there looking down to the Colorado River. Looking out for miles below, I can say this: if there is ever a doubt about the existence of God, go sit there. Things will get clear very quickly. At least they did for me. Very simple …and very clear.
When we got back to camp it was dark. My knee had suddenly tweaked on the way back and I could barely walk. As we got back into camp, we met up with our friend Greg who had “run” back up to the top and back down (15 miles in one day) to bring Chris a much needed beer. I don’t think Chris has ever been so grateful for a cold one. As we got into camp, Doug met us and warned us that a rattlesnake had curled up in our camp and looked as if he had decided to camp there for the evening. Ranger Jeff informed us that he was not allowed to move it since we were actually in the snake’s home. Doug had borrowed some additional tents from the ranger station just in case those who were planning to sleep out under the stars change their mind…and they all did. I was so tired I didn’t even care (and I hate snakes). I zipped up my tent; put on Anthony’s battery operated Bipap, and went to sleep with my throbbing knee and my peaceful soul. I have never felt as safe in the world as I did that night.
Monday, May 12, 2014
Day 1 in the Canyon…May 3rd, 2014
Didn’t sleep great, didn’t care. Was up most of the second half of the night with AC but of course comfortably fell asleep an hour before it was time to get up. I was a bit scattered getting up and going. I couldn’t believe it was here. In retrospect, I wish I would have lay in bed for my usual 10 minutes to pray, be present and set my intentions for the day. But I was too charged. Luckily, I would have 9 plus miles ahead to get centered.
Walking into Bright Angel lodge was like a whirlwind. Everyone was there buzzing around with excitement. All I wanted was one last good cup of coffee before we set out but as soon as Carol brought me one, you could feel the collective pressure to leave.
We all gathered at the fireplace and took some pictures. We said goodbye to family, friends and staff who had gathered to send us off. We also met Jeff, our assigned ranger that the canyon had “made” us take since we were filming a documentary. We were resentful about the fees for what we believed to be unnecessary direction. However, he would later prove to be very valuable and by the end be considered a dear friend.
Hitting that trail with the sunrise fresh on the rocks was awesome….just awesome. I knew this would be our backyard for the next few days. The first day’s agenda was to hike all the way down which was 9.9 miles on Bright Angel Trail. Everyone always underestimates the down and the toll the descent takes on your body. I knew it would be hard but we were all so full of adrenaline and joy. Our plan was to stop in Indian Gardens, rest up, get water and put down some calories.
Somewhere near the mile and a half house, Anthony had to pee. Jeff, the ranger began his “leave no trace” speech just as he saw me pull out a portable urinal. Yes, we had pretty much thought of everything. From here on out, whenever AC would have to go, he would say “wall of pee please” and all the men would stand in a line with their backs to him blocking anyone’s view. It was really endearing and quickly turned into some male bonding time for all involved.
At the three mile house, Anthony insisted on going out to the lookout (more stairs). Our friend Todd Pendleton, gladly obliged. Once we were up there, we stopped so Todd could give Anthony a very special present. Todd, who works for Scottsdale Fire Department, had summited Everest almost one year ago. With him he had some Buddhist prayer flags that had been blessed by Llama Geshe in his 500 year old monastery as Todd began his trek to Everest base camp. He told AC the story of how he carried them all the way to the top of the world and held them up on the top of Everest. They were his last set and he wanted Anthony to have them. We were all speechless as he tied them to his chair. I later found out Todd had the flu and carried Anthony anyway. He would turn around at Indian Gardens after getting us halfway there only to recover in a hotel room and meet us as soon as he could. What a privilege it is to know these folks.
As we approached Indian gardens, we could hear the cheering. Hikers who had heard about AC in the canyon had lined up on the trail to clap and welcome us to the halfway point. We had planned to stay there and get refreshed but suddenly as we all started pulling our shoes off to put our feet in the cold stream, Jeff informed everyone that the mules were coming and we would either have to press on or wait an hour until they passed. Tim and Tina, our coaches, encouraged us to keep going to continue to try to beat the heat. Reluctantly, we got ourselves together and motored on. I felt bad as the Kath family had come up to hike with us to the halfway point and since they were ahead had taken off to the point to check out the views. We saw them as we crossed the switchbacks and yelled to one another across the canyon.
When we finally found shady spot to let the mules pass, everyone was really beginning to feel it. Anthony was slurring his words a little so we checked his oxygen levels. He was good and we just hydrated him along with salt tabs and more calories. Coming around the corner into what's known as the corkscrew, took my breath away. It was unbelievably rich. No picture you will ever see does it justice.
As we approached Phantom Ranch, Anthony reminded everyone that the whole reason this started was because he really just wanted to put his feet in the Colorado River. Even though it added a couple miles onto the already almost ten mile day, no one hesitated. We all waited for everyone so we could all cross the suspension bridge together. And although Dee had to run due to her fear of heights and vertigo, Tina, of course, ran behind her the whole way coaching from behind. I knew during this trip that each one of us would be called upon at one point or another to face our own unique challenges. We all cheered and yelled as the guys stepped aside so Oliver could pull his brother across the bridge in a ceremonial fashion.
Soon after, we were at the river. Clothes, shoes and socks went flying and we were all in the ice cold water in no time. We carried Anthony to the edge so he could put his feet in and make a mote with a castle. Watching him during that moment was just pure bliss.
At camp, everyone started to get settled. They had the BEST lemonade waiting for us and Tony began to unpack so he could get the food going for the guys. As everyone got settled in their bunk or campsite, DeeDee and I had a very long day ahead of us unpacking the mules and getting organized. That was one of the hardest parts for me. I was so sore and tired. I felt like I was going to just lose it if I heard one more person say “where’s my……”. Crazy! Though exhausted and yearning to rest, I was still grateful to everyone that helped us make it down there….grateful enough to help everyone get settled for the next four hours. I must have walked 5 more miles that night handing out gear. But soon, I was able to recompose and find more energy after the most appreciated shower I think I had ever had. Everyone was relaxing around camp, playing Farkle, having beers and talking about the wonder of the canyon.
The boys were so excited to receive cards and letters from Grandpa Coach and Nana Kate in the “boatman’s mail” that is brought down by mule once a week. And I myself received a beautiful card from my Dad telling me how proud he was. Working for my dad's (AKA "Coach")recognition seemed to be a ghost I had chased most of my adult life. At that moment, as I sat with the letter in my hands, I knew the truth.... I had always had it, I just needed to get out of my own way and have enough clarity to see. That’s another moment I’ll never forget.
The firefighters had dinner over at the campsite with Tony and the family got to eat the Hiker’s Stew in the Cantina. Since Doug doesn’t eat red meat we planned on him eating over at the campsite, however we had no idea that was another mile away. Sorry Doug! That was a very long walk I’m sure! I think we all tried to be grateful and think of the other team members who hiked back out that day after getting us there safely. They did this in a selfless act in order to save more spaces at the bottom for additional crew. Looking at what everyone was doing, I think we all did a good job of sucking it up anytime we felt weary or overwhelmed. That was the beauty of our team.
That evening, as I crawled in my bed next to Anthony, I took in all the stillness and peace. Even though my feet throbbed and my legs twitched, I felt an amazing sense of accomplishment. I laid there in awe listening to the breathing of my beautiful, exhausted, satisfied, little boys thanking God. In moments like those, the limitations, struggles and disappointments in my life seem like half a world away...just a faint memory I can barely even recall.
Walking into Bright Angel lodge was like a whirlwind. Everyone was there buzzing around with excitement. All I wanted was one last good cup of coffee before we set out but as soon as Carol brought me one, you could feel the collective pressure to leave.
We all gathered at the fireplace and took some pictures. We said goodbye to family, friends and staff who had gathered to send us off. We also met Jeff, our assigned ranger that the canyon had “made” us take since we were filming a documentary. We were resentful about the fees for what we believed to be unnecessary direction. However, he would later prove to be very valuable and by the end be considered a dear friend.
Hitting that trail with the sunrise fresh on the rocks was awesome….just awesome. I knew this would be our backyard for the next few days. The first day’s agenda was to hike all the way down which was 9.9 miles on Bright Angel Trail. Everyone always underestimates the down and the toll the descent takes on your body. I knew it would be hard but we were all so full of adrenaline and joy. Our plan was to stop in Indian Gardens, rest up, get water and put down some calories.
Somewhere near the mile and a half house, Anthony had to pee. Jeff, the ranger began his “leave no trace” speech just as he saw me pull out a portable urinal. Yes, we had pretty much thought of everything. From here on out, whenever AC would have to go, he would say “wall of pee please” and all the men would stand in a line with their backs to him blocking anyone’s view. It was really endearing and quickly turned into some male bonding time for all involved.
At the three mile house, Anthony insisted on going out to the lookout (more stairs). Our friend Todd Pendleton, gladly obliged. Once we were up there, we stopped so Todd could give Anthony a very special present. Todd, who works for Scottsdale Fire Department, had summited Everest almost one year ago. With him he had some Buddhist prayer flags that had been blessed by Llama Geshe in his 500 year old monastery as Todd began his trek to Everest base camp. He told AC the story of how he carried them all the way to the top of the world and held them up on the top of Everest. They were his last set and he wanted Anthony to have them. We were all speechless as he tied them to his chair. I later found out Todd had the flu and carried Anthony anyway. He would turn around at Indian Gardens after getting us halfway there only to recover in a hotel room and meet us as soon as he could. What a privilege it is to know these folks.
As we approached Indian gardens, we could hear the cheering. Hikers who had heard about AC in the canyon had lined up on the trail to clap and welcome us to the halfway point. We had planned to stay there and get refreshed but suddenly as we all started pulling our shoes off to put our feet in the cold stream, Jeff informed everyone that the mules were coming and we would either have to press on or wait an hour until they passed. Tim and Tina, our coaches, encouraged us to keep going to continue to try to beat the heat. Reluctantly, we got ourselves together and motored on. I felt bad as the Kath family had come up to hike with us to the halfway point and since they were ahead had taken off to the point to check out the views. We saw them as we crossed the switchbacks and yelled to one another across the canyon.
When we finally found shady spot to let the mules pass, everyone was really beginning to feel it. Anthony was slurring his words a little so we checked his oxygen levels. He was good and we just hydrated him along with salt tabs and more calories. Coming around the corner into what's known as the corkscrew, took my breath away. It was unbelievably rich. No picture you will ever see does it justice.
As we approached Phantom Ranch, Anthony reminded everyone that the whole reason this started was because he really just wanted to put his feet in the Colorado River. Even though it added a couple miles onto the already almost ten mile day, no one hesitated. We all waited for everyone so we could all cross the suspension bridge together. And although Dee had to run due to her fear of heights and vertigo, Tina, of course, ran behind her the whole way coaching from behind. I knew during this trip that each one of us would be called upon at one point or another to face our own unique challenges. We all cheered and yelled as the guys stepped aside so Oliver could pull his brother across the bridge in a ceremonial fashion.
Soon after, we were at the river. Clothes, shoes and socks went flying and we were all in the ice cold water in no time. We carried Anthony to the edge so he could put his feet in and make a mote with a castle. Watching him during that moment was just pure bliss.
At camp, everyone started to get settled. They had the BEST lemonade waiting for us and Tony began to unpack so he could get the food going for the guys. As everyone got settled in their bunk or campsite, DeeDee and I had a very long day ahead of us unpacking the mules and getting organized. That was one of the hardest parts for me. I was so sore and tired. I felt like I was going to just lose it if I heard one more person say “where’s my……”. Crazy! Though exhausted and yearning to rest, I was still grateful to everyone that helped us make it down there….grateful enough to help everyone get settled for the next four hours. I must have walked 5 more miles that night handing out gear. But soon, I was able to recompose and find more energy after the most appreciated shower I think I had ever had. Everyone was relaxing around camp, playing Farkle, having beers and talking about the wonder of the canyon.
The boys were so excited to receive cards and letters from Grandpa Coach and Nana Kate in the “boatman’s mail” that is brought down by mule once a week. And I myself received a beautiful card from my Dad telling me how proud he was. Working for my dad's (AKA "Coach")recognition seemed to be a ghost I had chased most of my adult life. At that moment, as I sat with the letter in my hands, I knew the truth.... I had always had it, I just needed to get out of my own way and have enough clarity to see. That’s another moment I’ll never forget.
The firefighters had dinner over at the campsite with Tony and the family got to eat the Hiker’s Stew in the Cantina. Since Doug doesn’t eat red meat we planned on him eating over at the campsite, however we had no idea that was another mile away. Sorry Doug! That was a very long walk I’m sure! I think we all tried to be grateful and think of the other team members who hiked back out that day after getting us there safely. They did this in a selfless act in order to save more spaces at the bottom for additional crew. Looking at what everyone was doing, I think we all did a good job of sucking it up anytime we felt weary or overwhelmed. That was the beauty of our team.
That evening, as I crawled in my bed next to Anthony, I took in all the stillness and peace. Even though my feet throbbed and my legs twitched, I felt an amazing sense of accomplishment. I laid there in awe listening to the breathing of my beautiful, exhausted, satisfied, little boys thanking God. In moments like those, the limitations, struggles and disappointments in my life seem like half a world away...just a faint memory I can barely even recall.
Saturday, May 10, 2014
Grand Canyon; Arrival May 2, 2014
We arrived at the Grand Canyon with a ton of excitement and a massive amount of organizational tasks ahead. The first stop I insisted on making was to the Back Country Office. We went in to say hi and meet in person, Mark Wunner. He is really one of the key folks who helped this adventure grow into what it was. Although I faxed over the campsite request on New Year’s Eve so it would be the first application seen in 2014, there were no guarantees. Not only did he connect me with the Superintendent but he also paved the way for me to work with the head of Xterra. That’s the company who takes reservations for the bottom over a year ahead of time. The thought of being able to get anything at Phantom Ranch was inconceivable; but somehow through the flexibility of the staff and infectious spirit of Anthony and his wish, we were able to secure 19 spots at the bottom. We were excited to meet the man who was such a huge support. Of course he was wonderful, humble and said he simply “just loves doing his job and making dreams come true”.
Next, we headed over to the Livery barn to coordinate and drop off all the gear. This was the only part of the trip that was frustrating and challenging for me. I remained calm and tried to remind myself how absolutely lucky we were. I was also thanking the stars above I had my talented production coordinator, Dee Dee McGee cracking the whip on everyone. We had to weigh each duffle and stay within 30lbs and specific dimensions. I had given everyone a weight limit after taking out 4 duffels for food and 1 for medical. We had purchased 360lbs altogether. I figured if everyone stuck to the limit of 15-20lbs we would make it work. It was way more complicated than that because I miscalculated that some of the duffels had such awkward items in them such as sleeping bags, they would not actually be able to be stuffed to the maximum capacity of 30lbs. This little oversight left us quite a bit of gear unpacked. With only an hour left to the cut-off point, we were under the gun and had to add some mules which affected the budget. I was frustrated I had spent all that time obsessively planning and it still wasn’t right. But I quickly put the problem into proper perspective, accepted the costs, and moved on. The one person that did get it right was Tony, our chef. I couldn’t believe how great he did for very little budget. He pre-cooked, froze and fit all his food for us at the bottom on his 4 mules! That was amazing! Also Tupac, our medic, was able to fit a whole mini medical triage on his back complete with IV’s, precautionary heart support and general first aid (this will be so impressive later on when you hear how he wore it while also carrying AC).
After checking into our hotel we headed over to Maswick lodge to meet the whole team for dinner. Seeing everyone from all the different teams finally together in the same place was totally overwhelming. Linda passed out the shirts she had made and Carol made peanut butter and jelly sandwiches for our day packs tomorrow. We got to finally meet Ryan, our videographer for the documentary. The boys nicknamed him the bug eater based on his participation in “Out of the Wild” on the discovery channel where he cooked up a variety of vermin in order to survive. He made the boys feel comforted with his survival skills however we all agreed that hopefully we wouldn’t need to rely on them for this particular trip.
We also met some more of the volunteer’s family members who made the journey up so they could be part of it. There was also a whole new group of guys that were friends with Todd from Scottsdale Fire Department who drove up just to see if there were any last minute tasks unassigned. That was unbelievable to me….and very helpful. We had not really figured out who was going to carry the 20lb pack with Anthony’s ventilator in it. Dee Dee and I were prepared to carry it and switch off but that plan wasn’t ideal. She and I really needed to be light and free to keep up to the carriers and care for AC on the trail. Darrell, our team leader for the firefighter group, called me over and introduced me to Wade. Wade was a young man I had never met who just drove up because he heard about the adventure and wanted to help. It was decided Wade would carry the ventilator pack all the way down and then hike back out making sure he didn’t take up any unplanned space. That still chokes me up just thinking about it.
I got up and made a speech to all the firefighters, pro-hikes, friends, family and strangers who had gathered for our son. I don’t remember what I said but I will never forget how I felt. It was truly indescribable. I think I said something to the effect that when Anthony got diagnosed, we felt so alone and so very isolated. But now we know the truth, we are not alone, we are part of a beautiful village and we love our village. Everyone was emotional as several different folks got up and spoke. Lastly, Carrie, our chef’s girlfriend, asked if she could speak. She said she didn’t know Anthony but was so honored to meet him. Carrie explained that Tony had been on the river trip last year with AC and had come home profoundly affected by him which in turn, affected her. She was so emotional she asked if I could read a proverb that she had brought.
“We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love…..and then we return home.” – Australian Aboriginal Proverb
There was not a dry eye and it was a perfect way to end the evening. Now all we had to do was put aside our excitement and nervousness and try to get some sleep because tomorrow we would be setting off on a Daring Adventure, one that was about to change all of our lives forever.
Next, we headed over to the Livery barn to coordinate and drop off all the gear. This was the only part of the trip that was frustrating and challenging for me. I remained calm and tried to remind myself how absolutely lucky we were. I was also thanking the stars above I had my talented production coordinator, Dee Dee McGee cracking the whip on everyone. We had to weigh each duffle and stay within 30lbs and specific dimensions. I had given everyone a weight limit after taking out 4 duffels for food and 1 for medical. We had purchased 360lbs altogether. I figured if everyone stuck to the limit of 15-20lbs we would make it work. It was way more complicated than that because I miscalculated that some of the duffels had such awkward items in them such as sleeping bags, they would not actually be able to be stuffed to the maximum capacity of 30lbs. This little oversight left us quite a bit of gear unpacked. With only an hour left to the cut-off point, we were under the gun and had to add some mules which affected the budget. I was frustrated I had spent all that time obsessively planning and it still wasn’t right. But I quickly put the problem into proper perspective, accepted the costs, and moved on. The one person that did get it right was Tony, our chef. I couldn’t believe how great he did for very little budget. He pre-cooked, froze and fit all his food for us at the bottom on his 4 mules! That was amazing! Also Tupac, our medic, was able to fit a whole mini medical triage on his back complete with IV’s, precautionary heart support and general first aid (this will be so impressive later on when you hear how he wore it while also carrying AC).
After checking into our hotel we headed over to Maswick lodge to meet the whole team for dinner. Seeing everyone from all the different teams finally together in the same place was totally overwhelming. Linda passed out the shirts she had made and Carol made peanut butter and jelly sandwiches for our day packs tomorrow. We got to finally meet Ryan, our videographer for the documentary. The boys nicknamed him the bug eater based on his participation in “Out of the Wild” on the discovery channel where he cooked up a variety of vermin in order to survive. He made the boys feel comforted with his survival skills however we all agreed that hopefully we wouldn’t need to rely on them for this particular trip.
We also met some more of the volunteer’s family members who made the journey up so they could be part of it. There was also a whole new group of guys that were friends with Todd from Scottsdale Fire Department who drove up just to see if there were any last minute tasks unassigned. That was unbelievable to me….and very helpful. We had not really figured out who was going to carry the 20lb pack with Anthony’s ventilator in it. Dee Dee and I were prepared to carry it and switch off but that plan wasn’t ideal. She and I really needed to be light and free to keep up to the carriers and care for AC on the trail. Darrell, our team leader for the firefighter group, called me over and introduced me to Wade. Wade was a young man I had never met who just drove up because he heard about the adventure and wanted to help. It was decided Wade would carry the ventilator pack all the way down and then hike back out making sure he didn’t take up any unplanned space. That still chokes me up just thinking about it.
I got up and made a speech to all the firefighters, pro-hikes, friends, family and strangers who had gathered for our son. I don’t remember what I said but I will never forget how I felt. It was truly indescribable. I think I said something to the effect that when Anthony got diagnosed, we felt so alone and so very isolated. But now we know the truth, we are not alone, we are part of a beautiful village and we love our village. Everyone was emotional as several different folks got up and spoke. Lastly, Carrie, our chef’s girlfriend, asked if she could speak. She said she didn’t know Anthony but was so honored to meet him. Carrie explained that Tony had been on the river trip last year with AC and had come home profoundly affected by him which in turn, affected her. She was so emotional she asked if I could read a proverb that she had brought.
“We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love…..and then we return home.” – Australian Aboriginal Proverb
There was not a dry eye and it was a perfect way to end the evening. Now all we had to do was put aside our excitement and nervousness and try to get some sleep because tomorrow we would be setting off on a Daring Adventure, one that was about to change all of our lives forever.
Friday, May 2, 2014
Here We GO! The beginning of a Daring Adventure!
Yesterday was an amazing outpour of love from so many people from literally all over the world. The day started out with my sponsor reminding me to be present. I set my intention that I would approach all the packing and organizing with joy not stress, knowing I would never have this day back. I wanted it to be full of grace and love rather than martyrdom for all the hard work that I am capable of focusing on. For the most part, it worked. I stayed present, mostly patient, and full of joy. That was easy to do with all the calls and Facebook messages coming in constantly to remind me this thing is now so much bigger than me or us. Anthony and I may have gotten the ball rolling, but now it's about so many things to so many people.
Then a dear friend interrupted me in my travels and while I was searching for a portable urinal in Walgreens. She made me stop in the aisle and pray with her. She had written out this beautiful prayer for our family. And as I heard the papers shuffling and the quiver in her voice, I realized how much thought and love she had put into her well wishes. I was incredibly moved and yes, I felt the spirit of the universe warmly wrapped around me.
The rest of day was fun. People stopped by to drop off gear and as I looked across my garage stacked with backpacks, pads, and tents I realized what a huge coordinating effort this has been by so many. You would think we are going to climb Everest!
Today we set out for Flagstaff. We will arrive up there about 1pm and head to the Livery Barn. We will have to then pack and organize over 360lbs worth of gear and food for 12 Mules to carry. After that craziness, we will stop by and thank some of the Back Country folks at the Grand Canyon who pulled every string they could to make this happen. Anthony will the be third person in the history of the Canyon that we know of to descend all the way to the bottom without the ability to walk.
Next up we will meet the team, family and friends at Maswick Lodge for dinner @ 6. I can't wait to see everyone together and celebrate the huge accomplishment we have achieved. And that's before we step one foot into the canyon! This endeavor truly proves that community and love can raise us all up, and with others, we can accomplish SO much more than we ever can alone.
Then a dear friend interrupted me in my travels and while I was searching for a portable urinal in Walgreens. She made me stop in the aisle and pray with her. She had written out this beautiful prayer for our family. And as I heard the papers shuffling and the quiver in her voice, I realized how much thought and love she had put into her well wishes. I was incredibly moved and yes, I felt the spirit of the universe warmly wrapped around me.
The rest of day was fun. People stopped by to drop off gear and as I looked across my garage stacked with backpacks, pads, and tents I realized what a huge coordinating effort this has been by so many. You would think we are going to climb Everest!
Today we set out for Flagstaff. We will arrive up there about 1pm and head to the Livery Barn. We will have to then pack and organize over 360lbs worth of gear and food for 12 Mules to carry. After that craziness, we will stop by and thank some of the Back Country folks at the Grand Canyon who pulled every string they could to make this happen. Anthony will the be third person in the history of the Canyon that we know of to descend all the way to the bottom without the ability to walk.
Next up we will meet the team, family and friends at Maswick Lodge for dinner @ 6. I can't wait to see everyone together and celebrate the huge accomplishment we have achieved. And that's before we step one foot into the canyon! This endeavor truly proves that community and love can raise us all up, and with others, we can accomplish SO much more than we ever can alone.
Thursday, May 1, 2014
May 1st...1 DAY TO GO!
I'm so tired and didn't want to blog but so many amazing things are going on. First off, you all read that Monday we heard we needed a Bipap to help AC breathe at night. Well, any of you who know anything about Insurance and durable medical equipment know that this is a very long, frustrating process from when the doctors say you need it and when you actually get it. So telling us Monday we needed one for the Canyon in less than a week was pretty much impossible...or so one would think. But I called the company who I heard had one of the few "portable" ones that was battery operated. I got the name of the guy in charge form my doctor. I emailed him the link of video telling Antony's story and begged for a miracle. Turns out, he is an avid hiker and has always wanted to hike the Grand Canyon but never has. So he promised to do what he could. Unbeknownst to me, he was so moved he forwarded the video to a friend who works at Anthony's insurance company and she in turn made thousands of dollars of equipment somehow magically show up at our house the next day!
Luckily for me, DeeDee came right over. I texted her and told her I didn't think I could emotionally or logistically handle the 3 hour instruction that went along with all the gear. Thank God for her because what would have been an overwhelming, sickening day trying to face another milestone of DMD, turned into a day of angels totally looking over us! Anthony even made jokes about Darth Vader and had a totally flexible attitude about the whole thing. He just made me and DeeDee promise we would cover it up if any girls came over. On top of it all, we started it last night and I was up all night checking on him, thinking it would come off as soon as I left the room. Unbelievably, he went right to sleep and wore it for over four hours. This morning when I went in there, he was sitting on the edge of his bed smiling ready for his shower....a vast improvement from the yelling and moaning for me to go away and let him sleep which I have grown accustom to.
The only downside is that this lovely little "portable" Bipap they got for my backpack weighs about 15 pds (see photo) along with tubes and batteries. Luckily I have a lot of help.
Today is finally running around, organizing and packing so I can get some rest. Prayers, phone calls, emails and facebook messages are coming in literally from all over the world. I can't tell you how humbled I am. I am truly at a loss of words about all
the support we are getting...and those who know me, understand that me being at a loss for words, is in and of itself, a miracle!
Luckily for me, DeeDee came right over. I texted her and told her I didn't think I could emotionally or logistically handle the 3 hour instruction that went along with all the gear. Thank God for her because what would have been an overwhelming, sickening day trying to face another milestone of DMD, turned into a day of angels totally looking over us! Anthony even made jokes about Darth Vader and had a totally flexible attitude about the whole thing. He just made me and DeeDee promise we would cover it up if any girls came over. On top of it all, we started it last night and I was up all night checking on him, thinking it would come off as soon as I left the room. Unbelievably, he went right to sleep and wore it for over four hours. This morning when I went in there, he was sitting on the edge of his bed smiling ready for his shower....a vast improvement from the yelling and moaning for me to go away and let him sleep which I have grown accustom to.
The only downside is that this lovely little "portable" Bipap they got for my backpack weighs about 15 pds (see photo) along with tubes and batteries. Luckily I have a lot of help.
Today is finally running around, organizing and packing so I can get some rest. Prayers, phone calls, emails and facebook messages are coming in literally from all over the world. I can't tell you how humbled I am. I am truly at a loss of words about all
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