Once again, I'm asked to trust the process.

Yesterday was the one year anniversary from one of the most terrifying times I have ever been through…Anthony’s spinal surgery. Of course, we all know, he rocked it. Lately, I have been reminiscing on all the ups and downs of this crazy life. I think my recent lesson is trust…trust the process. This one is pretty tough for a situation like ours because the whole thing is really unfair and I know way harder things are on the horizon. So to suggest trust, may seem a bit delusional or incredibly naive. But here’s why I make this proposal…

For us, and I can only speak for us, every time there is dark, it is followed by light. Every time there is extreme fear, there is comfort and reassurance. And every time there is the robbery of hope, it is followed by some rare occurrence of a small yet impactful miracle.

Ac’s arms are getting weaker. It’s starting to impair the smallest of tasks. As usual, I was caught completely off guard, as if I was never educated about the progression of DMD. Last week, in the movies, AC discovered he could no longer eat popcorn. Trying to be strong and positive in the midst of his unfathomable discoveries has become one my biggest challenges. But I sucked it up, left myself out of it and fed him popcorn throughout the movie assuring we would simply find another way like we always do. A few days later, I came to the realization that an old high school friend I grew up that I had kept in contact with through Facebook, actually worked for the parent company of the X-aR Arms. I reached out to her, connected all the dots and a week later, she and designer of the arms are on their way to Arizona to install the robotic arms on Anthony’s chair. Within a week, not only was Anthony’s popcorn dilemma solved, but a small miracle occurred and once again, just in the nic of time, hope revealed. This is how our life works.

I don’t have any idea if it works this way for anyone else. I can only say, the dark times seem to provide more cracks for the light to shine through. I look around at so many others who seem to have even less hope, less help and less light. I can only speculate that we are very blessed; I honestly can’t imagine why we would be special. Perhaps it’s so we can share our light with others. Either way, I feel compelled by some divine order to look at the bad and the good, and find a way to gleen some trust from this crazy process.

FINAL DAY- VEGAS BABY!

AC had a rough night tossing and turning and asking for things every two minutes for over an hour. I was so frustrated, tired and worried about him I shed a few tears to let some steam off the pot. He put his hand on my back in the dark and said "sorry Mom". It was such a precious moment. This morning, as usual, he woke up grinning ear to ear. Poor guy has been so flexible and adventurous but it’s time for his own bed again. Luckily his smile is so infectious that we all caught it and started the day off with renewed vigor.

We promised we would hit the pool for a while and let his body unhinge before we started our final trek home. He’s been looking forward to the bikini’s the whole trip. The boys have also never had a Vegas buffet so we decided to introduce that bit of gluttony to them. It was fun and soon we were on our way down the road towards Phoenix.

The boys have been amazing in the car. No movies, games or computers. Just listening to music and talking for days. What a total treat for me as a Mom. I hope they look back and have all the memories I have hoped for. I feel so blessed that I was able to take them. My wonderful boss/boyfriend supported me taking the time off and thanks to my new job I was able to afford the trip. All the stars lined up and it was all I had hoped for. I feel incredibly blessed.

My life is intense. And it can be very challenging a lot of the time. I’m not down playing how big some of the things we face as a family are, however, I have also learned that it takes just as much energy to be miserable as it does to be grateful. For every single unfair thing I can think of to feel like a victim, there’s a gift or something great that’s happened to balance it out. I think you need both. And I find that my level of happiness is exactly equal to the attachment I have to either.

When I can stand by and watch life with all its colorful characters and dramas as if I’m an audience member rather than taking it all personal, I’m fascinated and full of joy and curiosity. When things get tough and I can stay in the supporting role rather than the director running the show, I see that things work out and keep changing even without my permission or guidance. I still struggle to stay in this space but at least now I feel it immediately when I’m not and can make corrections to get back on course.

This trip was so beautiful. Even the imperfections. Watching my boys navigate the joys and challenges of the last couple months, I realize it’s possible that when I look back, this just may be the summer…..the summer our boys became men. I could write for days and never be able to express how privileged I feel to be a part of that.

DAY SIX and SEVEN- YOSEMITE & DEATH VALLEY

We awoke at 6 am to the sounds of a car booming I don’t know what genre of music on the street below our window. It was so loud it shook out beds and we all woke up laughing. Luckily today we are on to somewhere beautiful.

The drive from San Francisco was great and the boys loved going across the Bay Bridge. We stopped in this tiny town and had lunch at this old saloon. It was the first watering hole in CA that had been there since the 1800’s. There was all this history all over the walls about hanging some men on the tree outside for stealing gold. The boys dug it.

Yosemite was incredible!!!! The moment we hit the park and we saw El Capitan and the Falls I knew I was in love. We checked into our tents in Curry Village and just messed around the rest of the day and evening. It was so gorgeous. Smelled like pine and sitting in rocking chairs on a porch made my soul sing. We met a few families from France and Germany.

It was so fun staying in the big commercial tents. We even got an accessible one which made AC really happy. He could fly around the village in his power chair and we also took the hiking chair so we could access the inaccessible trails. Deedee and I decided we are definitely coming back for a week next year.

After ten was quiet time in the village and you could hear a pin drop. I’m definitely in my element here. I felt so incredibly peaceful and serene and had one of the best night’s sleep I’ve ever had. I think we all did. Even AC slept great, after all the bear stories.

The next morning after packing up we hiked up to see Yosemite falls. It was incredible and we were sad we hadn’t built in another couple days here. Our next stop was Vegas for tonight but the boys chose to stay in the park as long as we could and forego any shows or activities in Vegas. That turned out to be wise because we had no idea what was in store for the day ahead!
When I did the research, I saw it took 5 hours to get from Yosemite to Vegas. Well, that was from the edge of the park! It took us three hours to get through the park. It was an extraordinary drive but it was certainly made for a long day.

It got pretty interesting! Going through Death Valley was another travel moment we will never forget. I had no idea it would be so spectacular. But I also had no idea it was SO windy and steep and that we would need to go so slow. We came down 11,000 feet to Sea level. It was a trip! There were sand dunes everywhere…it was so silently beautiful. At one point though, the brakes were slick and stinking, we were low on gas and we were sure we had missed our tiny turn off. Things got a bit stressful and everyone got a little short with one another. We were so excited to find a gas station/oasis in the middle of nowhere. We fueled up and found out we were actually on track, it was just taking way longer than planned.

AC was a total trouper and Oliver kept pointing out all the good things every time Deedee and I got a little bit negative. Once again, not the most comfortable part of the trip, but one everyone will remember forever. We played would you rather and laughed for hours. As Oliver pointed out, it’s been great family time.

We got into Vegas super late and very exhausted! We decided to end our long crazy day Vegas style and ordered up some decadent room service. It was a great conclusion to a pinnacle part of the trip.

I thought about how everything in our lives go, when it gets a little rough we just slow down and take our time. Whether it’s physically carrying AC or getting through something really uncomfortable emotionally, we just take one step at a time, rest and reboot when necessary. Once we are on the other side, it all looks very different. There isn’t anything we can’t do when we tackle it that way.

DAY FIVE- SAN FRANSICO

Driving into the city was beautiful. Traffic was no fun but we made it down the embarcadero and met up with one of my nearest and dearest, Ryan, who has been for about 28 years. We had a fabulous lunch upstairs at the Franciscan overlooking the piers- yellowtail, crab dip, calamari and clam chowder in big sourdough bowls. Delish!

Walking around Pier 39 wasn’t super fun as it was too crowded. I wanted the boys to see the golden gate bridge but the traffic on it was hellacious so we hopped on a cruise around the bay. The only place the chair could go was in the downstairs of the boat so we carried AC to the top for some gorgeous views of Alcatraz and the bridge. Lots of beautiful parasails blowing around the bay. It was pretty spectacular seeing the bridge from underneath it.

After we left the pier we went to check into the hotel. Ok, well it was supposed to be a hotel. It was much closer to a hostel, shared bathroom and all. At first it was a bit unsettling. Deedee and I couldn’t stop laughing ‘cuz it was such a divergence from all the other places we had stayed the whole trip. It sat right on the edge of China town with a “massage” parlor next to it. It was not at all what was pitched on the internet.....they have a fabulous web designer. Once we got over the initial concerns, we decided it was going to be very late at night if we tried to find a new place, so we decided to take it as just part of the adventure.

As we walked down the street, we realized we were also on the edge of Little Italy, so in short we had an excellent dinner in a very quaint bistro. The boys had fun with all the crazy sights and sounds. AC almost wrecked his chair when some of the lovely ladies came out of one the nearby businesses scantily clad. It was pretty funny seeing his eyes as big as they got and even more exciting hearing my boys philosophically debate the difference between a stripper and an exotic dancer.

As we all lay trying to ignore the mardi gras of sounds traveling up from the street below, we lay listening to Oliver’s hilarious commentary on the events unfolding throughout the night. We all laughed and laughed and as awful of a choice as it was, it will definitely be a memorable part of the trip. Perhaps, one I will probably never live down, but none the less, remembered forever.

As I lay there trying to fall asleep, I pretended I was in some exotic country, you know, like Bangkok, and thought about how compelled I feel to always find the silver lining. I think that’s because deep in my heart, I know the truth…..all those less than perfect experiences we share now, may in fact, someday be ones we wish we had back. And whenever I find myself rushing through something because it’s not ideal, I remind myself that when I look back, these days will most likely be the best days of my life. For that,I am very grateful for the consciousness this journey has brought me. I am awake and I'm not going to miss a thing.

DAY FOUR- PACIFIC GROVE

Another great day. Hung out in Monterey at the aquarium and had lunch on Cannery Row at Bubba Gump’s. The boys were great and it was fun to watch DeeDee navigate the crowds with AC. She’s become a pretty fierce advocate for him. It warmed my heart and made me chuckle as she sternly taught all the little kids how to get out of his way. Patience is always the theme whenever you go somewhere like that with a wheelchair.

I have found if you are in no hurry and have no expectations, you save yourself a ton of aggravation. It took a long time to learn this and I got it from AC. He taught me patience. As those around him get frustrated for him, he smiles and stays very calm and at ease. Once in a while he gets frustrated but he sees it as an opportunity to make all those around him laugh. He foregoes every opportunity to take some unaware person out with his 375lb chair. He waits patiently all day for others to go first through doorways and for abled people to take his turn on the elevator. As I find myself being impatient and wanting to let someone have it, I look to him for guidance. He introduces the notion that while we wait, it’s just more time to spend talking about something fun or laughing at the insanity of others pushing to get ahead. He waits for drinks, food, to go to the restroom. He waits for us to answer his annoying bell to get him needed items, join conversations and now even to roll over in bed. It’s humbling to see his grace and kept me in check today as children climbed over him to watch the sea otters get fed as their parents rudely cheer them on.

Last night had to be one of my all-time favorite nights ever. We are staying just blocks from the beach so we decided to pass on sitting in another restaurant for dinner. Instead we hit the traders Joes, and decided to have a sunset picnic on the beach. That turned out to be the wisest vacation plan ever made. WOW. I’m a writer and I couldn’t possibly find the words to describe the serenity and beauty of that sunset meal.

We had cheese, crackers, sausages, grapes, bread and chocolates. It was awesome! I got Deedee a nice bottle of Petite Syrah and watched her enjoy that. After years of sobriety (yesterday was the 6 year mark), I still can appreciate how wonderful it must have tasted during that colorful sunset all the while being totally comfortable with knowing that time has long passed for me. The boys loved the evening as much as we did and the laughter and conversation warmed our hearts as we watched the waves crash and spray over the jagged rocks. A memory I will treasure forever.

DAY THREE- BIG SUR COASTLINE

What an incredible day! I have done that drive several times but never with the new fresh eyes of my boys. Again, they are such great travelers. Curious, fun and no complaining. None. With occasional stretching AC did great in his chair and just kicked it back every so often to get some additional circulation going. The one thing he didn't have to stretch was the huge smile he had all day. And I only had to ask Oliver twice to put his phone away and join the party but that is only because he has just secured his first official "girlfriend" so apparently there's lots to discuss with her. Not bad though for dragging teenagers from site to sight to see/sea.

We stopped for breakfast at Pismo Beach. The boys were so excited we could drive right on to the beach. There weren’t a bunch of dune buggies like I’ve seen before but there were a few and the boys loved it. AC got his wheelchair stuck but we had the hiking chair so no worries!

After winding up the highway awhile, we stopped to check out the elephant seals which of course was a blast. Huge loud lazy seals laying around everywhere. That was super fun. We saw whales breaching along the Big Sur Coastline and the boys were pretty wowed by the scenery, curvy roads and bridges.

Most of the day, Deedee drove which was great. I can’t help myself but draw the obvious parallel about how nice it is when you can let go enough to sit back and enjoy the ride, something I have gotten so much better at over the years. There is such a sense of relief when you aren’t in charge and don’t have the weight of running the universe on your shoulders. However, I’m not completely Zen in that arena considering I had to hop back behind the wheel when the super curvy turns started. But I’m certainly getting better.

We had a lovely dinner and walk through the town of Carmel. The boys feasted on Salmon and Steak while Dee and I enjoyed some Sea Bass and Lobster Ravioli. Next stop was our cute little accessible cottage in Pacific Grove out on the 17 mile Drive. I can’t even begin to tell you how at peace I am with the sea air, roaring whitecaps and beautiful cypress trees hanging off the edges of the jagged cliffs. It’s absolute heaven and anytime I get the least bit antsy, I am easily reminded we will never have this day back. I continue to approach these days as if I came back in time on purpose to specifically to experience this day exactly this way. And with that, I’ll be sleeping like a baby in the cool ocean breeze in no time.

DAY TWO- CITY OF ANGELS

Today we started off one the PCH HWY and drove from Laguna up to Huntington Beach to see our dear friend Matty. Beautiful breakfast on the beach. He was the awesome dude who took the pictures for us during the Grand Canyon trip. He’s just one of the many people that incredible journey brought into our lives. We had a great breakfast and walked the pier. Lovely.

Next stop was our close friend’s house in West Hills CA for a day with their two boys. The boys are in heaven playing with their buddies. The Ferrante’s have been our friends/family way before we ever had the boys. It felt a bit like coming home.
Today I thought about “real love”. I had a couple moments today where I was completely overwhelmed with real love and friendship.

First off, I wanted to squeeze in a visit with one of my absolute besties, Ashley. As the morning got later and later and we hadn’t left Huntington, the boys got more anxious about getting to their friends. I called her up and explained what was transpiring. Her response without hesitation was “this is your trip, you relax and just do what you want”. And she meant it! She basically said she would love to see us but what was more important was for me to enjoy the trip and not kill myself to make someone else happy. In that moment, my heart felt so full. I thought to myself… that’s love. That’s real friendship. Wanting what’s best for your friend. Real love to me, is wanting someone to be happy and wanting what’s best for them even when it doesn’t include me or my needs.

As I pondered this thought, I looked over at DeeDee. This is where I first learned this. People always wonder how DeeDee and I can be so close given she’s Chris’ (my wasbund) fiancée. That’s how it started. When Chris and I got divorced, it was hard. The hardest thing ever. But I love Chris. He’s my family. And because I truly love him, I want what’s best for him… she’s best for him. Simple as that. And if I wanted to teach my children to give love as if they will never run out, I had to show them this example. And now I really love her. A lot.

Next we arrived at our friend’s house to find our dear friend “Uncle Drew” had built ramps all throughout his house for AC. Once again, the tears welled and the heart warmed. I think having a child like Anthony forces us to open our hearts and look past our egos. One of the greatest gifts of this deal is that I have learned at the end of the day, we are all the same. We all need the same things (to feel loved, to be heard, to have purpose). And you can give without worrying that you will run out, because the more you give, the more you make. And if think when you operate from that premise, it’s pretty easy to see lots and lots of love all around. It may sound corny, but isn’t it great?

The kids swam and had a blast. We all just hung, laughed and had and warm beautiful evening full of connection. Everyone took turns without a word helping Anthony. Another amazing memorable day on the adventure!

DAY ONE – PHX, CORONA, LAGUNA

Today we drove from Phoenix to Laguna Beach, CA to stay a night with my brother. We had an opportunity to stop in Corona to fit AC for his new hiking chair. Last year I applied for a grant from Challenged Athlete’s Association for a new hiking chair for Anthony and he was given $1800! It was perfect timing right after the surgery. Since we always borrow Daring Adventures chair, we are thrilled at the prospect of having our own. There are lots of nuances we need to support his post-surgery back now so this will be much easier than the make-shift project Chris had to tackle every time we got the chair back.

Next stop was my brothers in Laguna Beach. The deck on his home overlooks the ocean where we kicked back, relaxed and breathed in the gorgeous sunset. Just being out of our normal environment is very refreshing and I already have felt my shoulders drop several inches.

Today reminded me that my boys are amazing travelers. Amazing. Low maintenance, no complaining, smiling, happy, flexible and courteous. Let’s how they are on Day 5! traveling with DMD is definitely some extra work and planning. However, with a ton of patience and a confidence of knowing there's always help and a solution if you ask, we have found no reason yet to boldly go where everyone else gets to go.

Just feeling really blessed. We are off to a great start!

Setting Out for a New Adventure!

Once again driven by Anthony's incredible sense of wonder and adventure and my need to be the joy detective has launched us into another bucket list worthy summer adventure. After discussions of all the places he still wants to see, we have comprised an exciting fast paced itinerary of beautiful destinations we can knock out in the short time I'm able to get off work.

Tomorrow morning, the boys, Muma 2 (aka Deeders) and myself will set out for a Chevy Chase style week long road trip! And since I’m a person who needs to write to sort it all out and fully experience my life, I felt compelled to share along the way. Thanks for allowing me to indulge, organize and unravel.

I remember so many summers where I was trapped alone with the boys in the Scottsdale heat with no budget and no ability to escape. I remember it was so difficult to stay positive and focus on the good stuff in that scenario. Of course now it helps that I’m blessed enough to have the ability to take them to travel, but some other type of escape has happened as well. For most of those early years, I felt like a mouse on a colorful patterned rug, only seeing the tiny inches that were in front of me and never realizing the beauty and complexity of the total tapestry.

After years of traveling the DMD highway, I have had a shift of perspective. I’ve backed up a bit and the picture seems to have expanded. I feel less attached to how it needs to look and more interested in the reality of what actually is. All the while, being aware, I'm still only able to see a limited portion of what is really there. Oddly enough, this admission of ignorance comforts me. I find myself able to bring my thoughts back to the here and now with a little more ease.

When I get in fear or resentment (what I call “stuck in the muck”), which of course I still do, I am able to recognize it a little quicker. I have the understanding that if I can just come back to the here and now, I will discover that I’m actually OK. I understand that when I’m not in the present, I’m not in reality. I’m either in a story I’ve created, or a memory of the past. Neither one is my current reality.

When I am in fear or anxious, it’s because I’m thinking of the future that isn’t here yet, a vision that I’ve created in my head. One that that no matter how real it feels, isn’t.

And when I’m sad or angry, it’s generally because I’m thinking of the past and focusing on what didn’t go according to my explicit instruction. Or what I believe, from my limited view, is lacking.

The moment I think about how I am right now, right this very moment, I almost always realize I’m OK. I’m safe and I have everything I need right now. And better yet, as soon as I’m able to wrestle myself out of this self-centered muck I’ve created, the first thing I usually always see?

My boys smiling faces waiting for the next adventure.

So here we go boys, the next adventure……

Surgery...8 Days Away

We are in the zone. Just made our final trek to Utah for the clinical trial appt. that we owed them. Several updates to share!

Anthony is healthy and looking great. Still squeezing in every nutritious, immune building, weight gaining piece of food and drink we can. Still stretching him and getting him in the pool. Being joy detectives and finding happy moments wherever we can, laughing a lot and talking about what he can expect. He knows he will wake up with a tube in his mouth and he needs to try to stay calm. We will get things off of him as soon we can. He’s being incredibly brave. He still tells everyone we see “he’s a bad-ass”. And now after trying out the arms last week and finding out there will be metal rods in his back, he’s also telling everyone he’s pretty much going to be like the terminator. His whole attitude is completely inspiring me through all this preparation; I don’t have much time to be anxious. I’m sure that time will come!

Another silver lining alert… people are amazing. Amazing. My dear friend/angel Melissa Forney has arranged a vigil on the day of the surgery. The surgery starts at 7:30 and since we are using 2 surgeons will hopefully be cut in half to 6 hours instead of 12. Therefore, she is holding a little power of prayer service at 9:30 am at Mountain View Presbyterian on Hayden in Scottsdale. This will give our family and friends something to do instead of sitting at the hospital feeling helpless. There are also about 10 ladies who have stepped up and are taking 30 minute prayer assignments where all they focus on is AC and our family. Even writing this right now brings tears to my eyes. Sometimes I wonder why it takes such craziness to remind us we are not alone. During these times, we have the privilege of witnessing these incredible examples of how much pure love there is in our community. It seems to me, the trick is to carry these examples in our hearts during dark times knowing by letting in this light, it guarantees to brings about that much needed balance.

Since from here on out there the updates are going to be more technical, I’m switching back to Anthony’s CaringBridge page:

www.caringbridge.com/visit/anthonycastle

The last time I wrote in there was in June of 2013. I was upset because I had to get a shower chair. Wow. Perspective is very powerful isn’t it?

One last thing….as most of you know, AC loves travel. And he loves postcards. If anyone from anywhere other than the Scottsdale/Phoenix area wants to add to the collection, I’m sure he would be very grateful. He will be at Phoenix Children’s Hospital starting February 13th for at least a week. If you want to send them out of that timeframe, message me and I’ll give you our address.

Anthony Castle
C/O Phoenix Children’s Hospital
1919 E. Thomas Rd
Phoenix, AZ 85016

Since this blog is about lessons from the trail, I will say today’s lesson is community. The same thing I learned in the canyon. While we can certainly try to do things alone, everything is richer when we do it together. Like the saying goes, “We may go faster alone, but we go farther together”. Thank you village. We are forever moved by the generosity and love. And even though I fancy myself as a writer, I’ve yet to find the words needed to convey our gratitude adequately. So for now, just know it’s in our hearts and not one thought or action expressed goes unnoticed or unappreciated. I can only promise I will continue to pay it forward for all the days to come.

Upcoming Adventure: Red Carpet Event for “Anthony’s Adventure” premier, March 31st @ Tempe Arts Center. Details to come!

30 Day FU DMD Challenge!

I’ve always loved projects. There is a beginning and an end and I get to feel accomplished when I reach it. It’s how I cope. It’s my way of doing what I can knowing the ultimate outcomes are actually seldom in my control but the steps to get there are. So it’s no surprise that I’m taking on these next 30 days before surgery, like a project.

It’s my little FU DMD 30 Day Challenge. We aren’t going to cower in the face of DMD. We are facing it head on. As I always say, DMD may get his body, but it will not get his soul or spirit. We may have to patch his body up from time to time but his spirit runs free in the hearts of everyone who loves him. And it runs way too fast for DMD to ever catch.

For the next 30 days we will focus on doing our best to get us ready: physically, mentally and spiritually. This blog is called “Lessons from the trail” to focus on the lessons, not just the adventures. One of those lessons, whether training for the canyon, 4 peaks or spinal surgery, is to take one day (sometimes one moment) at a time, put one foot in front of the other, and have some faith it will add up to the goal. It’s easy to dream the big dreams, but I have found in my experience the success of getting there is in the work of the little steps. It’s a subtle combination of seeing the big picture and believing you can make it, then filing that away and focusing on the how and the now.

The plan: Stretching, myofascial release, aqua therapy, getting gravity off the spine every two hours, superfoods for immunity for all of us, researching, gathering resources, ordering gear, hiring caregivers, strengthening ABS for safer lifting (uggh), meditating, reaching out telling friends and family what we will need, practicing the cough assist, getting AC’s weight up so there’s room to lose, resting, cleaning, organizing and picturing positive outcomes.

And most importantly of all, as our coach Tina taught us during the canyon, SMILING the whole time. I believe the “work” is great Zen practice for training ourselves to stay in the moment and ride it out. The work is the mediation and in it you get to exchange the self-pity for the joy of the moment.... or in tough moments, the lesson.

We’ll see how it goes. I don’t want to make being positive sound easy. It’s not. But this my way of moving through the worry about what hasn’t happened yet and turning it into useful, memorable, special time that we will remember forever as being a time of beauty and love instead of fear and anxiety. I’ve learned this is a choice I have to make over and over; sometimes each day, sometimes each moment.

And when I feel invaded by doubt, I just take Anthony’s lead. He teaches me the truth: by being blessed enough to have been taught to approach challenges in the past with courage, openness and grace, nothing less going forward will feel acceptable. And if we did spend that time in fear and panic, we would do a disservice to all those who got us here.

Sometimes life picks our next big adventure for us, one that just isn’t on our list

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.

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.

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.

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.

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”.

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.

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.

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.

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.