We have just signed up for our biggest mountain to climb yet. About three weeks ago, during a routine visit we found out that even though Anthony has just gone off his feet less than 6 months ago and has received aggressive care, he is one of the rare cases where his spine has curved to a dangerous degree virtually overnight. In DMD, due to the weakness in the back combined with our boys old peoples bone density, it is something you have to watch for vigilantly as it greatly impacts lung and heart function. When a spine becomes curved more than 25%, we typically start discussions regarding a surgery to correct it. When the spine reaches 50% it becomes a very dangerous decision and the odds of life threatening risks are greatly increased. We found out Anthony is at 40%.
After getting over the shock, horror, denial and anger…I began researching. I spent a week gathering resources and researching options. After much due diligence, just before the holidays we interviewed the lead surgeon that will be doing Anthony’s surgery…. Dr. Schrader @ Phoenix Children’s Hospital.
The risks are very intense and although we are very educated and aware, I think they are better left off. There is no denial, just a decision to avoid giving certain possibilities more power. We are however, taking every precaution and are putting together an all-star team. There will be two orthopedic surgeons working in tandem to get him off the table as fast as possible to minimize complications. There will be our trusted pulmonologist, Dr. Woodward, and his team, to get him off the ventilator as soon as we can after. There will be an amazing cardiologist Dr. Ellsworth on standby to monitor his heart the whole time. The surgery will take about 5 hours. He is expected to be in ICU for a few days if all goes well, in the hospital a week or so after that and then up to two months at home.
When we visited the Dr. I tried to get Antony to go for a ride with one of the staff and he said no. He wanted to hear. I tried to argue and he looked at me and DeeDee and said, I want to hear the questions and be in the discussions. The Dr. did a great job of being sensitive but he still listened to things no kid should ever have to hear and worry about. Later he said he was scared. I said, yes buddy. It’s pretty scary. But we are going to rock this like we do everything else. He asked “Mom can I say a bad word?” I said “Sure buddy.” He said, “yea… I’m kind of a bad ass”. Yes, AC you sure are. You are kind of a bad-ass.
And of course his first concern was hiking and traveling. I assured him that was our new focus, to get him back in that hiking chair as soon as we can (he has his sights set on Humphrey’s Peak in Flagstaff and Yosemite after that). The surgery is currently scheduled for March 11th however they are looking for a sooner date if possible. Although that’s a bit far out for my comfort, there is a lot of work we need to be doing from now until then to prep AC for the best possible outcome.
I could go on about how unfair this is….how terrified and pissed I am. But I know in my heart the truth. Life yields suffering. We all have it. It comes in many shapes and forms and for every person I know who hasn’t had this painful of a trial in their life; I know so many more that have. I don’t feel especially picked on by the universe nor do I necessarily think that God chose us for some reason. I simply feel it is what it is. We are going to be very challenged and we are going to grow because of it. And I think that there will be times much like on the trail where we just don’t think we can take another step. And then we will. And we will take another after that. Because that’s just what we do.
And in the end, there will be stories of fear, ugliness and hardship. But I think there will be even more of love: big, huge, break your heart wide-open kind of love. This may just be our finest hour. And when we look back at the path behind us, and we are on the other side, we will hopefully have some awe, faith and compassion in our hearts that wasn’t there before. But I guess we will see. I guess that’s why it’s called an adventure.
I will keep you updated. In the meantime, when you think of us, send us some light and love for a safe journey…. because it does help. We feel every bit of it. And as we learned in the Canyon, we can't do this alone.
Friday, December 26, 2014
Friday, November 14, 2014
Being Awake..... the night before.
Time to rock and roll!!!!! Emails out to the team. Check. 15 PB & J’s made. Check. Bags packed and gear organized. 20 oranges sliced and frozen, maps printed, contact lists sent out. Check. Check. Clothes laid out so we can dress and jump in the car while it’s still dark.
We love this!
The family’s eating carbs and chatting it up about all the logistics. Anthony is too excited to go to bed early but has to. Tomorrow will be just under 20 miles in hopefully less than 10 hours. I’m taking my therapeutic dose of motrin. Chris and DeeDee fixed up his chair. Love and joy fills the air tonight.
Once again, just like the canyon, what comes to mind is being present. Taking in every minute…. this is what it’s all about.
Life is precarious for everyone. We have to be vigilant and open to what it’s trying to tell us.
Many of the parents in our community live with one foot in their son’s grave. Understandably so, I have too. But Anthony has taught me that if I am living in the past pain of the diagnosis or the loss of my hopes and dreams of the way I thought it should go, or I’m living in fear of the future and what can happen next, then I’m NOT in reality.
And if I’m not in the reality of the present…..I might just miss the damn whole point.
Being awake is one of the greatest things I have gotten from this unexpected path. I can’t wait to see what tomorrow will bring. Whatever it is…. I will be there. And better yet, I will be surrounded by lots of folks I adore who will be sharing those very same moments...feeling every step of the way.
We love this!
The family’s eating carbs and chatting it up about all the logistics. Anthony is too excited to go to bed early but has to. Tomorrow will be just under 20 miles in hopefully less than 10 hours. I’m taking my therapeutic dose of motrin. Chris and DeeDee fixed up his chair. Love and joy fills the air tonight.
Once again, just like the canyon, what comes to mind is being present. Taking in every minute…. this is what it’s all about.
Life is precarious for everyone. We have to be vigilant and open to what it’s trying to tell us.
Many of the parents in our community live with one foot in their son’s grave. Understandably so, I have too. But Anthony has taught me that if I am living in the past pain of the diagnosis or the loss of my hopes and dreams of the way I thought it should go, or I’m living in fear of the future and what can happen next, then I’m NOT in reality.
And if I’m not in the reality of the present…..I might just miss the damn whole point.
Being awake is one of the greatest things I have gotten from this unexpected path. I can’t wait to see what tomorrow will bring. Whatever it is…. I will be there. And better yet, I will be surrounded by lots of folks I adore who will be sharing those very same moments...feeling every step of the way.
Wednesday, November 12, 2014
Cultivating Trust on Holbert Trail
Sunday we practiced Holbert trail which is the last and most technical of the 4 peaks for this coming Saturday. What an amazing day. I guess if I had to pick a lesson or theme for this experience, I would have to focus on trust. This trail is harder than anything we have ever carried him on. It’s all rocks and for a hiker more of a scrambling situation than a trail. It’s slippery and takes grace to navigate on foot let alone carrying my son in a chair. I had to trust. And more importantly, Anthony had to trust.
As always, taking my lead from my kid, I got comfortable in the hands of our volunteers. I watched as they discussed who would do what, who would watch for what and when it got tricky, what steps were coming up when. There was a lot of exposure. He will need a helmet. And there were some times where he held his body funny trying to compensate for the positions they had him in. We will have to address that with more foam on the chair and carefully placed straps.
All in all, it was a beautifully cohesive experience. Watching the synergy that developed with each step was really a sight to see. Once again, I was reminded that we are stronger as a village and when I hog the responsibility and gravity of the extra work, I rob others of an amazing opportunity to give and by proxy, receive.
Watching Anthony speak and advocate during the hike as to what he needed was awesome. Watching him trust others to meet his needs was a reassurance that I will always have support and so will he. And more importantly, that he will navigate getting that support himself.
My wish for him is that he learn to get all his needs met, physically, emotionally and spiritually. There is apparently no shortage of folks around him for him to connect to for any one of those areas. Although there is much in his life he can’t control, experiences like this hopefully bring home the message to him, there is just as much in his life that he does have power over and he needs to take it.
To paraphrase the poem Invictus, he is the master of his fate, he is the captain of his soul. That lesson applies to me as well. There are so many times I feel so helpless when it comes to our life so I too have the choice to accept the things I cannot change, and pray for the courage to change the things I can. Giving my son opportunities to build trust for others not only empowers him but also helps him learn to be the captain of his life…… and I’m beyond grateful for all those who help support that.
As always, taking my lead from my kid, I got comfortable in the hands of our volunteers. I watched as they discussed who would do what, who would watch for what and when it got tricky, what steps were coming up when. There was a lot of exposure. He will need a helmet. And there were some times where he held his body funny trying to compensate for the positions they had him in. We will have to address that with more foam on the chair and carefully placed straps.
All in all, it was a beautifully cohesive experience. Watching the synergy that developed with each step was really a sight to see. Once again, I was reminded that we are stronger as a village and when I hog the responsibility and gravity of the extra work, I rob others of an amazing opportunity to give and by proxy, receive.
Watching Anthony speak and advocate during the hike as to what he needed was awesome. Watching him trust others to meet his needs was a reassurance that I will always have support and so will he. And more importantly, that he will navigate getting that support himself.
My wish for him is that he learn to get all his needs met, physically, emotionally and spiritually. There is apparently no shortage of folks around him for him to connect to for any one of those areas. Although there is much in his life he can’t control, experiences like this hopefully bring home the message to him, there is just as much in his life that he does have power over and he needs to take it.
To paraphrase the poem Invictus, he is the master of his fate, he is the captain of his soul. That lesson applies to me as well. There are so many times I feel so helpless when it comes to our life so I too have the choice to accept the things I cannot change, and pray for the courage to change the things I can. Giving my son opportunities to build trust for others not only empowers him but also helps him learn to be the captain of his life…… and I’m beyond grateful for all those who help support that.
Friday, November 7, 2014
Phoenix Summit Challenge, November 15. YES, that's next week.....
A few weeks ago I was asking Anthony if he wanted to do the Four Peaks Summit in Arizona. It’s an event where folks climb either 4 or 7 peaks in one day. Well, they had added an “accessible 4 peaks” where handicapped folks can participate and instead of doing the regular trails one can do an accessible path in front of the peaks. Daring Adventures called to see if Anthony wanted to do it since he missed last year due to nasty weather.
We just returned from a big trip kayaking through Glen Canyon for three days and camping so I felt like it was ok if he didn’t want to do it. So here’s how it goes down… “Hey AC, do you want to try the Four Peaks this year? They have accessible trails in front of the peaks so you can just stay in your wheelchair and do a modified version of the race”. His reply, spoken through his usual huge smile: “No Mom. I want the real ones. I want to climb the real ones, the real way”. Well, so much for knocking it out in his chair, scoring the kool t-shirt, and calling it a day.
So I looked it up. Anthony has trained me to never say no to his adventures without first doing my due diligence. Yep, 4 peaks in one day. That’s 20 miles of hiking plus loading then the driving from peak to peak. And one of the trails is dangerous and almost impossible to imagine getting his hiking chair up it. But as tradition would have it, I honored his request and put it out there to all the amazing friends we have accumulated from the canyon. I was certain I would hear that we were crazy. We were asking too much.
Even though many of our closest friends are out of town, we still had 12 carriers step up right away, several of them new. We have swapped out Squaw Peak (the crazy hard one) for another one of the seven summits so he will still summit 4 and it will still total 20 miles that day. We had to promise Anthony he will see the top of Squaw peak another day. The search and rescue guys are already talking about some “caterpillar” thing they will do to get him up there. But that will be better tackled on a day where that’s the only one we do. That will be safer for all.
When we got together to practice last week for the first time that old familiar feeling was back and everyone was so excited. We climbed Shaw Butte. It was tough and there were some new Phoenix firefighters that joined us. Totally glorious day that infected all! This Sunday we will be out practicing Holbert trail. It’s pretty technical and will really help us determine how much Anthony will be able to take in one day. I have NO idea how we are going to pull this off so fast but I know we will. I just know it.
As our dear friend Tina said when she sent an email to all her hard-core hiker friends looking for volunteers…. “carrying Anthony will change your life”. I know I have certainly found that to be true, but then again, I am his Mom. Carrying him for me is a privilege of the highest kind.
We just returned from a big trip kayaking through Glen Canyon for three days and camping so I felt like it was ok if he didn’t want to do it. So here’s how it goes down… “Hey AC, do you want to try the Four Peaks this year? They have accessible trails in front of the peaks so you can just stay in your wheelchair and do a modified version of the race”. His reply, spoken through his usual huge smile: “No Mom. I want the real ones. I want to climb the real ones, the real way”. Well, so much for knocking it out in his chair, scoring the kool t-shirt, and calling it a day.
So I looked it up. Anthony has trained me to never say no to his adventures without first doing my due diligence. Yep, 4 peaks in one day. That’s 20 miles of hiking plus loading then the driving from peak to peak. And one of the trails is dangerous and almost impossible to imagine getting his hiking chair up it. But as tradition would have it, I honored his request and put it out there to all the amazing friends we have accumulated from the canyon. I was certain I would hear that we were crazy. We were asking too much.
Even though many of our closest friends are out of town, we still had 12 carriers step up right away, several of them new. We have swapped out Squaw Peak (the crazy hard one) for another one of the seven summits so he will still summit 4 and it will still total 20 miles that day. We had to promise Anthony he will see the top of Squaw peak another day. The search and rescue guys are already talking about some “caterpillar” thing they will do to get him up there. But that will be better tackled on a day where that’s the only one we do. That will be safer for all.
When we got together to practice last week for the first time that old familiar feeling was back and everyone was so excited. We climbed Shaw Butte. It was tough and there were some new Phoenix firefighters that joined us. Totally glorious day that infected all! This Sunday we will be out practicing Holbert trail. It’s pretty technical and will really help us determine how much Anthony will be able to take in one day. I have NO idea how we are going to pull this off so fast but I know we will. I just know it.
As our dear friend Tina said when she sent an email to all her hard-core hiker friends looking for volunteers…. “carrying Anthony will change your life”. I know I have certainly found that to be true, but then again, I am his Mom. Carrying him for me is a privilege of the highest kind.
Monday, September 15, 2014
Happy Birthday AC! September 15th, 2014
Birthdays in Duchenne have traditionally always been bittersweet for most parents I know. When our boys are diagnosed we are given an aggressive timeline of when they stop walking, when upper body becomes affected and when the heart and lungs will fail. So it’s no surprise that we associate every passing birthday with one more loud tick of the tick-tock that plays as the background music of our lives.
After the Grand Canyon adventure, Anthony stopped walking completely. Since May I have struggled to write a follow up piece. All my energy was being used to adjust to our new reality and I had nothing to give. I wanted to write what an enormous influence the trip had on me, the boys, our family and everyone involved. I wanted to thank so many people for what they did to help that dream come true…but I was at a loss for words. for months. until now.
I cycled through some grief making the transition with AC. It couldn’t be avoided. It’s a vital process and I’ve learned when it comes to pain, there is no way out except through. But with that said, the love and joy that boy emulates every day is SO loud; it easily drowns out that tick tock in the background as long as I let it. And today I believe we have, once again, come out the other side stronger.
Today Anthony turns 15. When he was little, I wouldn’t allow myself the luxury of daydreaming about the future. That was just too complicated of an undertaking. Today I can say I’m SO thankful I couldn’t. Because no matter how great and limitless those dreams would have been at that time, they would have fallen so very short of what we have today.
Never did I imagine in 15 brief years, my son would make such an indelible impact on not only my own heart but the heart of everyone who has spent time with him. He has taught gratitude, connection, humility, humor, courage and unparalleled passion for adventure. He’s taught several of us to show up in life in a way we never would have without knowing him. And he has taught me that it’s an emergency to be happy.
Since the Grand Canyon, Anthony is still touching lives and planning new experiences. And even in the space of becoming completely wheelchair bound (not to mention all the other new challenges that came with that change), he constantly carries with him a smile that he generously shares. Constantly.
When I asked what he wanted for his birthday this year, he gave me that gorgeous grin and said “I want a lovefest .” I know… that sounds scary… considering his age and all. I thought the same thing first time I heard it. But when I asked for clarification, I was told, “It’s a party where everyone who loves me, comes over and tells me.” That’s it. That’s all he wants for his birthday.
So lovefest it is!Feel free to come on over next Sunday if you want to join in. We will be here “celebrating everything until further notice”.
After the Grand Canyon adventure, Anthony stopped walking completely. Since May I have struggled to write a follow up piece. All my energy was being used to adjust to our new reality and I had nothing to give. I wanted to write what an enormous influence the trip had on me, the boys, our family and everyone involved. I wanted to thank so many people for what they did to help that dream come true…but I was at a loss for words. for months. until now.
I cycled through some grief making the transition with AC. It couldn’t be avoided. It’s a vital process and I’ve learned when it comes to pain, there is no way out except through. But with that said, the love and joy that boy emulates every day is SO loud; it easily drowns out that tick tock in the background as long as I let it. And today I believe we have, once again, come out the other side stronger.
Today Anthony turns 15. When he was little, I wouldn’t allow myself the luxury of daydreaming about the future. That was just too complicated of an undertaking. Today I can say I’m SO thankful I couldn’t. Because no matter how great and limitless those dreams would have been at that time, they would have fallen so very short of what we have today.
Never did I imagine in 15 brief years, my son would make such an indelible impact on not only my own heart but the heart of everyone who has spent time with him. He has taught gratitude, connection, humility, humor, courage and unparalleled passion for adventure. He’s taught several of us to show up in life in a way we never would have without knowing him. And he has taught me that it’s an emergency to be happy.
Since the Grand Canyon, Anthony is still touching lives and planning new experiences. And even in the space of becoming completely wheelchair bound (not to mention all the other new challenges that came with that change), he constantly carries with him a smile that he generously shares. Constantly.
When I asked what he wanted for his birthday this year, he gave me that gorgeous grin and said “I want a lovefest .” I know… that sounds scary… considering his age and all. I thought the same thing first time I heard it. But when I asked for clarification, I was told, “It’s a party where everyone who loves me, comes over and tells me.” That’s it. That’s all he wants for his birthday.
So lovefest it is!Feel free to come on over next Sunday if you want to join in. We will be here “celebrating everything until further notice”.
Wednesday, May 21, 2014
Day 3 coming out of the Canyon; May 5th, 2014
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.
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 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
Tuesday, April 29, 2014
April 29th...3 days before the Canyon & little bit of drama
What would a Daring Adventure be without a little drama before? I was waiting as it always seems to come. But the good news is,if it comes now before, then it always seem to be OK for the big day!
Yesterday we went to Phoenix Children’s to see Anthony’s pulmonologist regarding the sleep CO2 levels. There was some debate within the community as the DMD expert from Children’s Hospital in Pittsburgh said we don’t really treat the boys until the levels are at 50. Anthony is only 48.4. Our doctor here explained that if he wasn’t showing other symptoms such as weight loss, dizziness and exhaustion that may very well be true. However, since we are treating the whole child, we need to look at the whole picture. They ran several additional tests to get a comprehensive picture. All this information is always so tough to sort through and make these tough decisions. But that is a huge part of everyday life with DMD. I looked at all the evidence and then did what I always do…..
I contacted my mentor Pat Furlong from PPMD and asked her. I always trust not only her wealth of knowledge from years of sitting with every expert in the world,but more importantly I know that all I have to do is ask “if your boys were still here today, what would you do if this was your dilemma?” As always, I got profound wisdom, “Jill, follow you mother’s instinct; as usual you and Anthony will teach us more about DMD”. So with that, I decided we are getting the BiPap.
The company called and told me this was impossible to do before Friday. Anthony has to get fitted for a mask and adjust levels and then find a “Trilogy” which is the only one made small enough for a backpack and battery run for the canyon (not to mention insurance approval). But it turns out John, from the medical company, is a huge hiker and was so inspired to hear the story; he has committed to make this happen. I told him not to worry about insurance as I will begin my hourly calls. They generally push things through pretty quickly so I will stop bothering them. We are also getting a pulse oxymeter to measure his oxygen levels while we are on the trip. I am now certain he will be absolutely fine since we are taking every precaution necessary.
To add a little more excitement, Oliver woke up at 3am in excruciating pain (why is it always 3am with kids???). So trying not to cry while holding his ear, off Oliver and I went to the ER. I figured it was an ear infection so I decided it would be best since we couldn’t sleep anyway to get the antibiotics started. He got medicine and is sleeping soundly. All will be well just in the nick of time.
Today will be all the final packing weight adjustments and food decisions. I’m so relieved my partner in crime, Dee Dee is back from working to help. She can do the thinking for me today while I rest. Ive also made a commitment today to start having fun with all this craziness! I have enough experience to know that I will look back on this amazing adventure and see one of two things about these days leading up to it. I will either see me as excited and thrilled and laughing at all the insanity or I will see me as a stressed out worried wreck who is snapping at everyone and dreading all the work and I refuse to be the latter. NOW is the time to start having fun. We will never have these days back.
Lastly, tomorrow morning we head off to FOX 10 new station to start a three part series on Anthony’s Daring Adventure. I’m so grateful for the support and interest because as this story of hope spreads, so does awareness for DMD as well as promotion for the awesome team from Daring Adventures!
Yesterday we went to Phoenix Children’s to see Anthony’s pulmonologist regarding the sleep CO2 levels. There was some debate within the community as the DMD expert from Children’s Hospital in Pittsburgh said we don’t really treat the boys until the levels are at 50. Anthony is only 48.4. Our doctor here explained that if he wasn’t showing other symptoms such as weight loss, dizziness and exhaustion that may very well be true. However, since we are treating the whole child, we need to look at the whole picture. They ran several additional tests to get a comprehensive picture. All this information is always so tough to sort through and make these tough decisions. But that is a huge part of everyday life with DMD. I looked at all the evidence and then did what I always do…..
I contacted my mentor Pat Furlong from PPMD and asked her. I always trust not only her wealth of knowledge from years of sitting with every expert in the world,but more importantly I know that all I have to do is ask “if your boys were still here today, what would you do if this was your dilemma?” As always, I got profound wisdom, “Jill, follow you mother’s instinct; as usual you and Anthony will teach us more about DMD”. So with that, I decided we are getting the BiPap.
The company called and told me this was impossible to do before Friday. Anthony has to get fitted for a mask and adjust levels and then find a “Trilogy” which is the only one made small enough for a backpack and battery run for the canyon (not to mention insurance approval). But it turns out John, from the medical company, is a huge hiker and was so inspired to hear the story; he has committed to make this happen. I told him not to worry about insurance as I will begin my hourly calls. They generally push things through pretty quickly so I will stop bothering them. We are also getting a pulse oxymeter to measure his oxygen levels while we are on the trip. I am now certain he will be absolutely fine since we are taking every precaution necessary.
To add a little more excitement, Oliver woke up at 3am in excruciating pain (why is it always 3am with kids???). So trying not to cry while holding his ear, off Oliver and I went to the ER. I figured it was an ear infection so I decided it would be best since we couldn’t sleep anyway to get the antibiotics started. He got medicine and is sleeping soundly. All will be well just in the nick of time.
Today will be all the final packing weight adjustments and food decisions. I’m so relieved my partner in crime, Dee Dee is back from working to help. She can do the thinking for me today while I rest. Ive also made a commitment today to start having fun with all this craziness! I have enough experience to know that I will look back on this amazing adventure and see one of two things about these days leading up to it. I will either see me as excited and thrilled and laughing at all the insanity or I will see me as a stressed out worried wreck who is snapping at everyone and dreading all the work and I refuse to be the latter. NOW is the time to start having fun. We will never have these days back.
Lastly, tomorrow morning we head off to FOX 10 new station to start a three part series on Anthony’s Daring Adventure. I’m so grateful for the support and interest because as this story of hope spreads, so does awareness for DMD as well as promotion for the awesome team from Daring Adventures!
Sunday, April 27, 2014
April 27th….No hike, but lots of JOY!
I can’t believe we leave in 5 days. We aren’t hiking today. Instead we are celebrating with a potluck send-off at our house for our team and some of those who have supported us!
I remember a few years ago something challenging happened in a series of events that had been difficult for our family. Oliver looked at me and said” Mom, when does the bad stuff stop happening?” Without even thinking I replied, “It doesn’t buddy, that’s why we have to make a HUGE deal out of the good stuff”.
I was about to say I have no idea where that wisdom came from that day… but actually, I do know. It came from the same place that all these gifts and opportunities for this family come from. It came from a much higher source.
Today is the good stuff. Today is when we look at all the amazing people who are coming together to make this happen. We become aware of all the great love and joy this project brings out in so many who need it in so many different ways. And we spend our day in gratitude that we can be a part of that.
Yes,that's what we do. We make a really big deal out of the good stuff. That’s exactly how we do it.
Monday, April 21, 2014
April 20th Hike: Flexibility
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.
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.
Monday, April 7, 2014
April 3rd Hike- It's all about love!
This morning in the shower Anthony looked at me and asked me out of the blue,“ Why are all these people doing this for me?” I answered “because I think you inspire them buddy. Do you know what that means to inspire someone?” He said yes, then thought about it and asked for clarification. I said "you make them want to be better, and grateful for what they have. I think that you show them how to be happy because you are always so happy”. He seemed to be satisfied with that and went on to have me list all the new people that love him. This is a game we have always played when he gets down (which isn’t often). But when he is, I start listing all the people that love him and he joins in. This goes on for quite a while because the list is actually quite long. After a few minutes of it, he feels always better and goes back to being happy.
After accidentally seeing the video that’s been all over Facebook this week, he asked me about the timelines that I mention….stop walking between 8-10, arms and upper body and heart go in the teens and we will lose him between 12 and 20….” I had to explain these were timelines given to us 11 years ago and he has changed that timeline not just for himself but for many others with his participation in the clinical trial. It was a heartbreaking conversation to have with your child. I asked if he was scared and he said, yes, but lots of people love me. So we played the game.
Yesterday’s hike was awesome. We had a small crew be able to make it so I wasn’t sure how it would go, but it was great. Carrie, Jeremy and their boys came out to start filming (the Kickstarter site has reached $8,430 in less than a week). Dave brought a bunch of foam to add to Anthony’s chair so we spent quite a while in the parking lot but that’s important we do all those things now, not at the Canyon. We made good time once we started going and Anthony is learning how to ask for what he needs. He even asked Todd to get him out and stretch him when DeeDee and I weren’t keeping up.
I continue to be overwhelmed by the support and the far reaching effort this has become. Yesterday we met some great girls on the top and they took our picture. They were so moved they went home and donated. We had so many people on Facebook today already chime in that they had seen us on the trail Sunday. My wish is that their own steps became lighter as they saw us climb with our little hero. I hope that they carry positive messages into the rest of their day to all their loved ones after they come across us.
This morning when Anthony was asking about all these new people he would have to add to his love list, I realized that’s it! Just may be what it’s actually all about…. If we are truly loved in our life and have developed the full capacity to love back whole-hardheartedly, is there really anything more we need to accomplish in a lifetime? And if that’s the case, my son has accomplished more in his 14 years than most people I know, including myself. That smiling face is pure love and today I feel so blessed and truly inspired.
After accidentally seeing the video that’s been all over Facebook this week, he asked me about the timelines that I mention….stop walking between 8-10, arms and upper body and heart go in the teens and we will lose him between 12 and 20….” I had to explain these were timelines given to us 11 years ago and he has changed that timeline not just for himself but for many others with his participation in the clinical trial. It was a heartbreaking conversation to have with your child. I asked if he was scared and he said, yes, but lots of people love me. So we played the game.
Yesterday’s hike was awesome. We had a small crew be able to make it so I wasn’t sure how it would go, but it was great. Carrie, Jeremy and their boys came out to start filming (the Kickstarter site has reached $8,430 in less than a week). Dave brought a bunch of foam to add to Anthony’s chair so we spent quite a while in the parking lot but that’s important we do all those things now, not at the Canyon. We made good time once we started going and Anthony is learning how to ask for what he needs. He even asked Todd to get him out and stretch him when DeeDee and I weren’t keeping up.
I continue to be overwhelmed by the support and the far reaching effort this has become. Yesterday we met some great girls on the top and they took our picture. They were so moved they went home and donated. We had so many people on Facebook today already chime in that they had seen us on the trail Sunday. My wish is that their own steps became lighter as they saw us climb with our little hero. I hope that they carry positive messages into the rest of their day to all their loved ones after they come across us.
This morning when Anthony was asking about all these new people he would have to add to his love list, I realized that’s it! Just may be what it’s actually all about…. If we are truly loved in our life and have developed the full capacity to love back whole-hardheartedly, is there really anything more we need to accomplish in a lifetime? And if that’s the case, my son has accomplished more in his 14 years than most people I know, including myself. That smiling face is pure love and today I feel so blessed and truly inspired.
Wednesday, April 2, 2014
A Documentary on Anthony's Adventure!
Dear Friends, I know I have inundated you with the Grand Canyon hike stuff and probably driving you nuts but please bear with me. Two award winning producers, Jeremy & Carrie Simmons, (Travel with Kids, PBS) caught wind of Anthony's story and would like to produce a documentary. They are amazing people who truly "get it" and I would be honored for them to tell our story. They are doing a crowd funding campaign on Kickstarter so PLEASE take a moment to click on the site and watch the quick video. If there is some way you can support us, you will be helping us raise awareness for all boys with DMD. No donation is too small. Please check it out and help spread the word. I would be so grateful.
Click here to see the campaign
Click here to see the campaign
Tuesday, April 1, 2014
March 31st Non Hike: Rest When Needed (so you can go the distance).
Most days I have that little tune from Nemo going through my head on a loop “just keep swimming, just keep swimming…” I‘m not good at asking for help, taking a break, making myself a priority (ever) or any of the other skills required for survival when you are a caretaker. Ironically, exactly one month from when we head to the canyon, and I am going to blog about taking a break. This weekend there was no practice hike.
I guess overall the topic of pacing myself has always been a challenge for me. Not only on the trail, but with big projects project and with life in general. I used to tend to come out fast and furious and burn out before the end. When I used to run half and full marathons for the Run for Our Sons campaign, I learned how training for the race became a great analogy to our life with DMD. It was all about a constant steady pace through the times you have energy and want to run as well as through the pain that makes you want to crawl. Holding yourself back from running when your emotions take over is just as important as learning to be comfortable with being uncomfortable for the tough times. Knowing things will continue to change when you are in both spaces is essential to help prepare for the long haul. I think in DMD we all run in the beginning after the diagnosis but have no idea how long the journey is going to be. Pacing ourselves becomes essential for survival.
So on that note, we all got some great rest this weekend. I was able to hang with some friends who have a son who’s a bit ahead of Anthony in his progression and I can’t tell you the strategies, comfort and confidence we all got from that visit. It helped ease the transition not only hearing how to do things more easily and efficient but also knowing we are not alone and it is going to be just fine.
I spent the weekend working on the logistics such as food, gear, team coordination, hotel reservations and reaching more sponsors. We now have a base camp for the top with a handful of volunteers, a halfway camp with 6 staying for the change out team, 19 going to the bottom and 6 that are strong enough to climb in and out and fill in where needed. We also have several friends and family coming to just day hike and do the final part of the climb out with us.
Now it’s time to get back to the physical part. We are down to 30 days and still have so much training to do! We will be hiking next Sunday @ 8am and I’m hoping we are all renewed and stronger after a little break. I believe we are all still hiking on our own and mentally preparing for the climb ahead. The break personally helped charge me back up and I think Anthony and Oliver needed it as well. See you on the trail and if you see me trudging uphill just know I will most likely listening to that cute little Dora voice singing in my head, “just keep swimming. Just keep swimming…”
I guess overall the topic of pacing myself has always been a challenge for me. Not only on the trail, but with big projects project and with life in general. I used to tend to come out fast and furious and burn out before the end. When I used to run half and full marathons for the Run for Our Sons campaign, I learned how training for the race became a great analogy to our life with DMD. It was all about a constant steady pace through the times you have energy and want to run as well as through the pain that makes you want to crawl. Holding yourself back from running when your emotions take over is just as important as learning to be comfortable with being uncomfortable for the tough times. Knowing things will continue to change when you are in both spaces is essential to help prepare for the long haul. I think in DMD we all run in the beginning after the diagnosis but have no idea how long the journey is going to be. Pacing ourselves becomes essential for survival.
So on that note, we all got some great rest this weekend. I was able to hang with some friends who have a son who’s a bit ahead of Anthony in his progression and I can’t tell you the strategies, comfort and confidence we all got from that visit. It helped ease the transition not only hearing how to do things more easily and efficient but also knowing we are not alone and it is going to be just fine.
I spent the weekend working on the logistics such as food, gear, team coordination, hotel reservations and reaching more sponsors. We now have a base camp for the top with a handful of volunteers, a halfway camp with 6 staying for the change out team, 19 going to the bottom and 6 that are strong enough to climb in and out and fill in where needed. We also have several friends and family coming to just day hike and do the final part of the climb out with us.
Now it’s time to get back to the physical part. We are down to 30 days and still have so much training to do! We will be hiking next Sunday @ 8am and I’m hoping we are all renewed and stronger after a little break. I believe we are all still hiking on our own and mentally preparing for the climb ahead. The break personally helped charge me back up and I think Anthony and Oliver needed it as well. See you on the trail and if you see me trudging uphill just know I will most likely listening to that cute little Dora voice singing in my head, “just keep swimming. Just keep swimming…”
Monday, March 24, 2014
March 23 Hike; Follow up to Resiliency
Talk about resiliency! I woke up for today’s hike at 7am and
Anthony was not in his bed. I usually have to get him up and encourage him to
come out in the house. As I my last blog mentioned, last week he didn’t even
want to walk out into the kitchen. This morning I panicked a little as I looked
around the house checking to see if he was stuck in a bathroom or something.
There he was sitting on the couch in the den adjacent to the kitchen with the
hugest smile ever on his face. “Mom, I’ve been up forever waiting for you guys!”
It was a great sign that today’s hike was going to be much better.
And it was! We had a couple more folks come out that were
really awesome! David Baumgartner, another firefighter from Phoenix joined us.
I couldn’t believe he took time away from his 5 kids to come help us! And we
got the privilege of meeting Todd Pendleton, a Scottsdale Firefighter who
recently summited Everest. He has joined the team.
Ben was back from his injury and did great. It was also nice
to have Vickie along. She is the one who came over to my house first to help
encourage me to start putting this adventure together. I will forever be grateful for
her support. Vickie, Linda and Carol will be in charge of base camp and general
support for the team.
This time I decided to stay in front as much as I can. That
helped me to not constantly feel like I was coming from behind. And this time
Oliver made the same decision and stayed with me the whole time. Dee Dee helped
me take care of Anthony and we took turns stretching him, moving him and encouraging
water and food at each rest stop. Near the top when it got hard Dee Dee went
ahead so if I got behind she would be there when Anthony got to the next point.
I did much better this time and just as I was climbing up the hardest part, I
looked up and way ahead near the top was Oliver RUNNING up the final switchback
just behind Tina and Tim. I was so proud. I can’t believe how much he has
stepped up for his family.
Anthony did much better this time too, he was laughing and
being silly at the top as we all indulged in our frozen fruit. I think we are
going to stretch him out each time the carriers switch off which will be every
20 minutes on the descent.
I was so proud of how much better we did and then Tina and
Tim (our canyon coaches) gently reminded me that we only climbed 1000 feet
today. The canyon will be 5 times that! As much as we complain when Tim goes
too fast, I realize now what an amazing set of coaches we have in those two and
we need to let them work us into shape. As Tina says “The canyon is no joke. I
have seen the most fit people cry, vomit, fall to their knees and be shamed by
this canyon.” I know now they are “not trying to scare us, just prepare us”. She
did also give some great words of encouragement though: “Never doubt yourself, never let it get to
your brain that you are suffering. Always, always, always stay positive not
just for yourselves but for Anthony.”
For the family, we will struggle with this climb. I know
that. But I know we can do it because we have had a lot of practice doing what
others deemed to be impossible. This is just one more mountain we will climb to
prepare us and make us stronger for the next climb in the journey of DMD………and I do understand.... there
will definitely be more mountains to climb.
Wednesday, March 19, 2014
Resiliency
Today Anthony used his wheelchair to get around the house
for the first time. Up until now even though he’s slowing down he always walked
in the house, the classroom, and any other small space. This morning he fell
getting into the shower trying to sit on the shower chair. And I was holding on
to him. He has a big red spot on his hip but luckily that’s all. This is the
time in DMD where the boys are trying to stay on their feet as long as possible
and there are more and more falls. Often times, those falls result in broken
bones. It’s such a hard time for this disease because you really want to keep
them moving as long as you can, not only for their overall health but you also
add to the timeline of progression. However, it starts getting very tricky as
to when to let go and let them sit down.
Whenever he falls, after getting upset for a brief time
(sometimes a minute, sometimes just seconds) he always reminds me how tough he
is. “I’m tough, right Mom?”
But today, I understood when he asked if he could just ride
his wheelchair into the kitchen to eat because it was just too far.
The other night when I was talking about how hard it is to
decide whether to push him to keep walking or let him sit, my boyfriend
reminded me of something I’ve always said in the past when we discussed this
time coming. In my grief, I had totally forgotten my own wisdom and intuition.
I have always said, having watched so many parents go through it, that when
this time came I would just listen to my son and let him determine the course.
I have to remember this isn’t about me or anyone else. This is about Anthony
and today he is the expert. As parents, we tend to think we always know what’s
better because we can see the next ten steps down the road. But maybe this time
it’s best we don’t. It’s best that I just honor and support him because I can
promise….. this time, I don’t know what’s best. I have no idea.
I decided the theme of this week’s hike will be RESILIENCY. This
is the lesson I learn from both my sons on a regular basis and was reminded of
once again in the bathroom this morning. “Yes, buddy you are tough. You are the
bravest boy I know”.
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