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.
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