March 23 Hike; Follow up to Resiliency

Talk about resiliency! I woke up for today’s hike at 7am and Anthony was not in his bed. I usually have to get him up and encourage him to come out in the house. As I my last blog mentioned, last week he didn’t even want to walk out into the kitchen. This morning I panicked a little as I looked around the house checking to see if he was stuck in a bathroom or something. There he was sitting on the couch in the den adjacent to the kitchen with the hugest smile ever on his face. “Mom, I’ve been up forever waiting for you guys!” It was a great sign that today’s hike was going to be much better.

And it was! We had a couple more folks come out that were really awesome! David Baumgartner, another firefighter from Phoenix joined us. I couldn’t believe he took time away from his 5 kids to come help us! And we got the privilege of meeting Todd Pendleton, a Scottsdale Firefighter who recently summited Everest. He has joined the team. 

Ben was back from his injury and did great. It was also nice to have Vickie along. She is the one who came over to my house first to help encourage me to start putting this adventure together. I will forever be grateful for her support. Vickie, Linda and Carol will be in charge of base camp and general support for the team. 

This time I decided to stay in front as much as I can. That helped me to not constantly feel like I was coming from behind. And this time Oliver made the same decision and stayed with me the whole time. Dee Dee helped me take care of Anthony and we took turns stretching him, moving him and encouraging water and food at each rest stop. Near the top when it got hard Dee Dee went ahead so if I got behind she would be there when Anthony got to the next point. I did much better this time and just as I was climbing up the hardest part, I looked up and way ahead near the top was Oliver RUNNING up the final switchback just behind Tina and Tim. I was so proud. I can’t believe how much he has stepped up for his family. 

Anthony did much better this time too, he was laughing and being silly at the top as we all indulged in our frozen fruit. I think we are going to stretch him out each time the carriers switch off which will be every 20 minutes on the descent. 

I was so proud of how much better we did and then Tina and Tim (our canyon coaches) gently reminded me that we only climbed 1000 feet today. The canyon will be 5 times that! As much as we complain when Tim goes too fast, I realize now what an amazing set of coaches we have in those two and we need to let them work us into shape. As Tina says “The canyon is no joke. I have seen the most fit people cry, vomit, fall to their knees and be shamed by this canyon.” I know now they are “not trying to scare us, just prepare us”. She did also give some great words of encouragement though:  “Never doubt yourself, never let it get to your brain that you are suffering. Always, always, always stay positive not just for yourselves but for Anthony.” 

For the family, we will struggle with this climb. I know that. But I know we can do it because we have had a lot of practice doing what others deemed to be impossible. This is just one more mountain we will climb to prepare us and make us stronger for the next climb in the journey of DMD………and I do understand.... there will definitely be more mountains to climb.

Resiliency

Today Anthony used his wheelchair to get around the house for the first time. Up until now even though he’s slowing down he always walked in the house, the classroom, and any other small space. This morning he fell getting into the shower trying to sit on the shower chair. And I was holding on to him. He has a big red spot on his hip but luckily that’s all. This is the time in DMD where the boys are trying to stay on their feet as long as possible and there are more and more falls. Often times, those falls result in broken bones. It’s such a hard time for this disease because you really want to keep them moving as long as you can, not only for their overall health but you also add to the timeline of progression. However, it starts getting very tricky as to when to let go and let them sit down.

Whenever he falls, after getting upset for a brief time (sometimes a minute, sometimes just seconds) he always reminds me how tough he is. “I’m tough, right Mom?”

But today, I understood when he asked if he could just ride his wheelchair into the kitchen to eat because it was just too far. 

The other night when I was talking about how hard it is to decide whether to push him to keep walking or let him sit, my boyfriend reminded me of something I’ve always said in the past when we discussed this time coming. In my grief, I had totally forgotten my own wisdom and intuition. I have always said, having watched so many parents go through it, that when this time came I would just listen to my son and let him determine the course. I have to remember this isn’t about me or anyone else. This is about Anthony and today he is the expert. As parents, we tend to think we always know what’s better because we can see the next ten steps down the road. But maybe this time it’s best we don’t. It’s best that I just honor and support him because I can promise….. this time, I don’t know what’s best. I have no idea. 

I decided the theme of this week’s hike will be RESILIENCY. This is the lesson I learn from both my sons on a regular basis and was reminded of once again in the bathroom this morning. “Yes, buddy you are tough. You are the bravest boy I know”.

March 15th Hike; Lesson in Self-Compassion

We decided to alter Saturday and Sundays so different folks could come out. This time Carol Gary, a huge supporter, came out to check it out. And Doug made it out finally since he always play softball on Sundays. Tina, Tim and their two awesome friends Brett and Kristen were super helpful since we had less folks. It was nice that Toqua came out too even though none of the other firefighters could make a Saturday. The Fire Fighters Association also sent a check for $1000 which was incredibly generous! 

We always gather in the parking lot while we are getting ready and inevitably someone always walks by and recognizes us and our cause. Today was no different. We had several folks stop and wish us luck and even one lovely gal who met us and heard the story on the first training hike. Now we see her all the time. I finally just told Leslie to go ahead and just join us. We hope she does. 

Today’s lesson on the trail for me was self-compassion. It was tougher today for me as well as Anthony. For some reason even though we did the same hike and the same miles I huffed and puffed up the last part of the switchbacks. I was dizzy and didn’t feel very good when I hit the top. I had my usual orange slices to hand out for everyone but I had to sit down. My first reaction was to really beat myself up as to why I was having such a tough day, how am I going to keep up in the canyon, etc… But I’ve been getting so much better at self-compassion. It’s a tough one for me. I’ve always been very driven and I usually never get where I’m going without a good lashing. Now I’m getting to a place in my life where that just doesn’t work anymore. I can’t tolerate me being mean to me anymore. Getting through this journey with my boys, I have learned that I can share all the great philosophy I want, but my boys seeing me treat myself with kindness, compassion and forgiveness will teach them how to treat themselves and others. So I just accepted where I was today and moved through it nice and quickly and had an awesome hike down. 

Anthony was also tired today. Very grumpy teen ‘tude! Deeders brought sheepskin padding for the shoulder straps the guys made him so he was more comfortable and Dad and Deeders bought him his own camelback that goes around his waist. We had to get him up to stretch three times as opposed to the usual one. After the hike, he requested I stretch him out really well and give him motrin. That’s a first. It was a beautiful opportunity to see that everyone on the trail, no matter the level of fitness or reason for being there always puts Anthony first. Now we just have to get AC to request Tim to slow down. Not for Anthony (he’s probably telling him to go faster) but for the rest of us! He and Tina are determined to get us all into Canyon shape. Even though we have two amazing EMT’s on the trip with us for Anthony, I think we all are secretly a little comforted. 

Next week we will start to work on logistics. We have so much to figure out! Thank goodness we have a ton of talent in almost every area imaginable as well as a group of people that really understand what it means to truly be part of a team.

March 9th Hike: We got by with a little help from our friends

Yesterday’s hike was great. Seven miles up and back to the top of Bell Pass. Each time we go out, new folks join us. Today Will, Anthony's best buddy, came out to hike for a little while with us along with his awesome mom and 2 dogs. Anthony was so excited! 

Darrell and Mike from the Phoenix Fire department came out and brought two new guys, Tupac and Taqua. It was also nice to have Bob from the Gilbert Fire Department out again as well. Tina and Tim our Canyon experts came and brought a friend that Tina was training for a rim to rim experience (yes, 47 miles!). Lizzy, our trail angel (as Oliver calls her), had to slow her “bad-ass self” down a little so she could learn to be in back lifting the chair. Each position takes a completely different approach and changes as the terrain changes. The team learns more and more each week about how to handle turns, drops and steps. They are experimenting with different holds, gear and solutions for every possible scenario. I am so grateful to everyone one of them for being part of this experience. It is absolutely amazing to see a group of this size, with this much talent, be humble and work so hard together with no egos what-so-ever to make this dream come true for one family. It just brings me to tears every time I think about it! 

We have been debating whether to take Kaibab down and Bright Angel up or Bright Angel both ways. The pros of South Kaibab down were that it is shorter and very pretty. It’s also perhaps a little smoother so Anthony can be rolled a little rather than carried.  Bright Angel has high steps. It’s also less crowded and no mules. However, I think the majority of us are leaning towards Bright Angel since there is water, shade, and help if we need it. It is a lot less steep since its 2.5 miles longer so a little easier on the knees carrying. Also when it’s windy South Kaibab can be scary with all the exposure and ridges.

Linda from daring adventures came out this time and we talked a lot about the logistics of the base camps as well as the duffel service. We have mules carrying the gear down for the men carrying Anthony so it will makes things more pleasurable for everyone involved. Thank God we have her to help coordinate that!

Anthony got a little sore this time and we needed to stand him up to get the blood flowing. Oliver fell behind when we were going up the switchbacks. I told him he could wait there since it was an up and back and I left him. There we were at the top eating and taking in some fluids and a great view, and we look down and there is our awesome son climbing the hardest part of the hike with total determination. He refused to be left behind. LOVE that kid!

This week we will continue to collect donations, go after sponsors and gather items needed for the trip. We will be doing another training hike next Saturday at 9am. Please let us know if you want to come out and get inspired! We would love to have you. Soon I will be posting a slide show on the blog of all the team members along with quotes as to why they are doing this. 

On this hike, I thought a lot about humility and how many people are helping us. Asking for help has never been my strong suit. I realize now that as Anthony needs more help, I need more help too. I understand now that letting my pride stand in the way, is not only robbing Anthony of all these connections, but also robbing others of the joy they are experiencing and the lessons they are learning by helping. Things like this Grand Canyon Adventure could never happen without the help of many and the kindness of strangers. I do see the big picture and even though there are many days where things seem small, there are even more days where I see this is so much bigger than just Anthony and our family. This is about all of us.

March 4th Hike: Thoughts on HOPE

Today as I was training, I thought about hope. In my world, I have a never ending struggle in my mind as to whether hope is useful or counterproductive. Being in the transition phase of Duchenne Muscular Dystrophy with my son Anthony has brought about even more questions. 

I thought about our upcoming expedition. The minute my son expressed his wish to experience the bottom of the Grand Canyon, without question, I knew I had to find a way to make it happen. Of course it was mostly for him; to do anything I can to allow him to pursue his dreams in the midst of all his challenges. But I would be lying if I said it wasn’t for me too. 

When he was younger, I did all I could to stop the disease. I raised money for the cure, stalked scientists, dragged Anthony through clinical trials, went to conferences, talked to everyone and even pestered everyone in Washington DC to try to affect policy and change on a greater level. But it’s still happening. He’s still getting weaker.

Now I feel a new level of helplessness. When we wake up in the morning and he has suddenly lost another skill, one I know that will never come back, I have to wonder how helpful hope is. Is having hope living in denial? I wonder if I’d be better off learning to live life on life’s terms so I can handle the situation as effectively as possible without all the emotion.  I wonder if I am I avoiding the work of accepting reality and being in gratitude for what I do have, by hoping it will be different. When I am hoping things will be different, how am I truly living in the moment? And believe me, in my circumstances, I don’t want to miss a moment no matter how hard it is.

On the other hand, hope has been so useful in helping me to carry on and not stay in self-pity too long. As a mother, I believe it’s impossible to be told there’s nothing you can do to help your son. Those of you who are mothers know that’s not something we can even process. Since I have tried for so many years to change the outcome for my son and it’s still happening, I honestly need something to focus on to make me useful. So when Anthony’s asked me to get him to the bottom of the Grand Canyon, my first thought was….now THAT I can do. 

I don’t know which is true about hope, but I do know this. During this time where he is rapidly changing, I jump out of bed in the morning to take care of him and my other son, to continue to make calls to get sponsors for our trip and to train so I can make this happen for him. And I do have hope right now. I have hope that we will find intense joy and connection with others through this experience. We all have something to look forward to. So for today, I am in gratitude for what I have and not only am I accepting reality, but I’m choosing to make the most of it. Not just for me, but for everyone around me who may also need a reason to keep going.