What would a Daring Adventure be without a little drama before? I was waiting as it always seems to come. But the good news is,if it comes now before, then it always seem to be OK for the big day!
Yesterday we went to Phoenix Children’s to see Anthony’s pulmonologist regarding the sleep CO2 levels. There was some debate within the community as the DMD expert from Children’s Hospital in Pittsburgh said we don’t really treat the boys until the levels are at 50. Anthony is only 48.4. Our doctor here explained that if he wasn’t showing other symptoms such as weight loss, dizziness and exhaustion that may very well be true. However, since we are treating the whole child, we need to look at the whole picture. They ran several additional tests to get a comprehensive picture. All this information is always so tough to sort through and make these tough decisions. But that is a huge part of everyday life with DMD. I looked at all the evidence and then did what I always do…..
I contacted my mentor Pat Furlong from PPMD and asked her. I always trust not only her wealth of knowledge from years of sitting with every expert in the world,but more importantly I know that all I have to do is ask “if your boys were still here today, what would you do if this was your dilemma?” As always, I got profound wisdom, “Jill, follow you mother’s instinct; as usual you and Anthony will teach us more about DMD”. So with that, I decided we are getting the BiPap.
The company called and told me this was impossible to do before Friday. Anthony has to get fitted for a mask and adjust levels and then find a “Trilogy” which is the only one made small enough for a backpack and battery run for the canyon (not to mention insurance approval). But it turns out John, from the medical company, is a huge hiker and was so inspired to hear the story; he has committed to make this happen. I told him not to worry about insurance as I will begin my hourly calls. They generally push things through pretty quickly so I will stop bothering them. We are also getting a pulse oxymeter to measure his oxygen levels while we are on the trip. I am now certain he will be absolutely fine since we are taking every precaution necessary.
To add a little more excitement, Oliver woke up at 3am in excruciating pain (why is it always 3am with kids???). So trying not to cry while holding his ear, off Oliver and I went to the ER. I figured it was an ear infection so I decided it would be best since we couldn’t sleep anyway to get the antibiotics started. He got medicine and is sleeping soundly. All will be well just in the nick of time.
Today will be all the final packing weight adjustments and food decisions. I’m so relieved my partner in crime, Dee Dee is back from working to help. She can do the thinking for me today while I rest. Ive also made a commitment today to start having fun with all this craziness! I have enough experience to know that I will look back on this amazing adventure and see one of two things about these days leading up to it. I will either see me as excited and thrilled and laughing at all the insanity or I will see me as a stressed out worried wreck who is snapping at everyone and dreading all the work and I refuse to be the latter. NOW is the time to start having fun. We will never have these days back.
Lastly, tomorrow morning we head off to FOX 10 new station to start a three part series on Anthony’s Daring Adventure. I’m so grateful for the support and interest because as this story of hope spreads, so does awareness for DMD as well as promotion for the awesome team from Daring Adventures!
Tuesday, April 29, 2014
Sunday, April 27, 2014
April 27th….No hike, but lots of JOY!
I can’t believe we leave in 5 days. We aren’t hiking today. Instead we are celebrating with a potluck send-off at our house for our team and some of those who have supported us!
I remember a few years ago something challenging happened in a series of events that had been difficult for our family. Oliver looked at me and said” Mom, when does the bad stuff stop happening?” Without even thinking I replied, “It doesn’t buddy, that’s why we have to make a HUGE deal out of the good stuff”.
I was about to say I have no idea where that wisdom came from that day… but actually, I do know. It came from the same place that all these gifts and opportunities for this family come from. It came from a much higher source.
Today is the good stuff. Today is when we look at all the amazing people who are coming together to make this happen. We become aware of all the great love and joy this project brings out in so many who need it in so many different ways. And we spend our day in gratitude that we can be a part of that.
Yes,that's what we do. We make a really big deal out of the good stuff. That’s exactly how we do it.
Monday, April 21, 2014
April 20th Hike: Flexibility
Yesterday’s lesson from the trail was flexibility. What a pervasive theme that was for our whole week!
We had quite an impressive showing for our training hike yesterday considering it was Easter. Once again, the commitment of the folks involved is completely unbelievable. When we first got there, I was approached by our Chief Firefighter Darrell, and our trainer/ Grand Canyon expert Tim, with a proposal for a big change. They want to split Anthony’s trek up, which was going to be 10 hours on Monday into two days and have the family stay at the halfway point at Indian Gardens. Now keep in mind, we have a nice cozy cabin at the bottom for Anthony and a huge schematic of folks arranged in certain places that will all have to all be rearranged and we are two weeks away. But considering the week we had, flexibility was in the air and I conceded to the experts who totally have the best interest of my son at heart. So we are now going to go all the way down on Saturday, stay one night at Phantom ranch and head halfway up with a team on Sunday. We will stay the night at Indian Gardens and the rest of the team will come up from the bottom and carry him out on Monday. Considering how brutal I hear the last three miles are, this will still be an impressive feat. I am grateful for our team of experts and no matter how trepidatious they are bringing up change to Mama Bear, I hope they know that I am humbled and beyond grateful for all they are doing for us. And believe me, as inflexible as I may seem sometimes, it’s only because I’m dreading all the work in store to pull it all off. Just ignore me, I will only brood momentarily and then I WILL make it happen!
It was a busy week all the way around. For Anthony’s Daring Adventures, we got hit with a surprise $3,000 fee from the Grand Canyon for filming that we didn’t expect. Chris Castle and his dear friend Mitch at CenterStaging along with some friends from Spyder,came through and covered that cost. That was extraordinary! Spyder is also donating shirts for the crew. Our other wonderful friend Greg and his lovely girlfriend Kelli hosted a wonderful Biking & Silent Auction event and raised another $2500. And the park rangers at the Grand Canyon are working diligently to accommodate our last minutes changes. I just can’t believe how this is coming together.
On a family note, we had some tough news. Anthony’s sleep study came back and even though boys with DMD aren’t expected to have respiratory issues until after they have been off their feet for a while, Anthony is not doing well at night in regards to his breathing due to the strength of his diaphragm. He is going to need a Bipap at night to help him breathe. That will lower his CO2 levels, which are poisoning him. This is why he has been so dizzy and nauseous in the morning. It’s also why we have been struggling with his weight for the last year. He’s just too tired to eat. It’s a heartbreaking milestone in DMD however, the good news is that we are getting the machine and he will be in such better shape for the trip! Thank God for the trip to shift our focus.
The second family news from last week gives us a beautiful example of how Anthony creates a positive ripple effect on so many other lives. Oliver Castle has won 1st place in a NATIONAL contest for his essay on being KIND. The essay is really touching and can be found on my Facebook page. He credits his brother by talking about their relationship “that’s where I got my kindness from”. Oliver has taken what should be a very unfair, difficult situation for a sibling and turned it into an amazing display of grace and character.
So I think this week, the overall lesson for the Castle family was flexibility. Unexpected things will continue to come our way, but as long as we can let go of our expectations and embrace the gifts in our current reality, we will continue to move forward on the trail in a beautiful, courageous way hopefully helping others in our shoes to see..... everything will be OK.
We had quite an impressive showing for our training hike yesterday considering it was Easter. Once again, the commitment of the folks involved is completely unbelievable. When we first got there, I was approached by our Chief Firefighter Darrell, and our trainer/ Grand Canyon expert Tim, with a proposal for a big change. They want to split Anthony’s trek up, which was going to be 10 hours on Monday into two days and have the family stay at the halfway point at Indian Gardens. Now keep in mind, we have a nice cozy cabin at the bottom for Anthony and a huge schematic of folks arranged in certain places that will all have to all be rearranged and we are two weeks away. But considering the week we had, flexibility was in the air and I conceded to the experts who totally have the best interest of my son at heart. So we are now going to go all the way down on Saturday, stay one night at Phantom ranch and head halfway up with a team on Sunday. We will stay the night at Indian Gardens and the rest of the team will come up from the bottom and carry him out on Monday. Considering how brutal I hear the last three miles are, this will still be an impressive feat. I am grateful for our team of experts and no matter how trepidatious they are bringing up change to Mama Bear, I hope they know that I am humbled and beyond grateful for all they are doing for us. And believe me, as inflexible as I may seem sometimes, it’s only because I’m dreading all the work in store to pull it all off. Just ignore me, I will only brood momentarily and then I WILL make it happen!
It was a busy week all the way around. For Anthony’s Daring Adventures, we got hit with a surprise $3,000 fee from the Grand Canyon for filming that we didn’t expect. Chris Castle and his dear friend Mitch at CenterStaging along with some friends from Spyder,came through and covered that cost. That was extraordinary! Spyder is also donating shirts for the crew. Our other wonderful friend Greg and his lovely girlfriend Kelli hosted a wonderful Biking & Silent Auction event and raised another $2500. And the park rangers at the Grand Canyon are working diligently to accommodate our last minutes changes. I just can’t believe how this is coming together.
On a family note, we had some tough news. Anthony’s sleep study came back and even though boys with DMD aren’t expected to have respiratory issues until after they have been off their feet for a while, Anthony is not doing well at night in regards to his breathing due to the strength of his diaphragm. He is going to need a Bipap at night to help him breathe. That will lower his CO2 levels, which are poisoning him. This is why he has been so dizzy and nauseous in the morning. It’s also why we have been struggling with his weight for the last year. He’s just too tired to eat. It’s a heartbreaking milestone in DMD however, the good news is that we are getting the machine and he will be in such better shape for the trip! Thank God for the trip to shift our focus.
The second family news from last week gives us a beautiful example of how Anthony creates a positive ripple effect on so many other lives. Oliver Castle has won 1st place in a NATIONAL contest for his essay on being KIND. The essay is really touching and can be found on my Facebook page. He credits his brother by talking about their relationship “that’s where I got my kindness from”. Oliver has taken what should be a very unfair, difficult situation for a sibling and turned it into an amazing display of grace and character.
So I think this week, the overall lesson for the Castle family was flexibility. Unexpected things will continue to come our way, but as long as we can let go of our expectations and embrace the gifts in our current reality, we will continue to move forward on the trail in a beautiful, courageous way hopefully helping others in our shoes to see..... everything will be OK.
Monday, April 7, 2014
April 3rd Hike- It's all about love!
This morning in the shower Anthony looked at me and asked me out of the blue,“ Why are all these people doing this for me?” I answered “because I think you inspire them buddy. Do you know what that means to inspire someone?” He said yes, then thought about it and asked for clarification. I said "you make them want to be better, and grateful for what they have. I think that you show them how to be happy because you are always so happy”. He seemed to be satisfied with that and went on to have me list all the new people that love him. This is a game we have always played when he gets down (which isn’t often). But when he is, I start listing all the people that love him and he joins in. This goes on for quite a while because the list is actually quite long. After a few minutes of it, he feels always better and goes back to being happy.
After accidentally seeing the video that’s been all over Facebook this week, he asked me about the timelines that I mention….stop walking between 8-10, arms and upper body and heart go in the teens and we will lose him between 12 and 20….” I had to explain these were timelines given to us 11 years ago and he has changed that timeline not just for himself but for many others with his participation in the clinical trial. It was a heartbreaking conversation to have with your child. I asked if he was scared and he said, yes, but lots of people love me. So we played the game.
Yesterday’s hike was awesome. We had a small crew be able to make it so I wasn’t sure how it would go, but it was great. Carrie, Jeremy and their boys came out to start filming (the Kickstarter site has reached $8,430 in less than a week). Dave brought a bunch of foam to add to Anthony’s chair so we spent quite a while in the parking lot but that’s important we do all those things now, not at the Canyon. We made good time once we started going and Anthony is learning how to ask for what he needs. He even asked Todd to get him out and stretch him when DeeDee and I weren’t keeping up.
I continue to be overwhelmed by the support and the far reaching effort this has become. Yesterday we met some great girls on the top and they took our picture. They were so moved they went home and donated. We had so many people on Facebook today already chime in that they had seen us on the trail Sunday. My wish is that their own steps became lighter as they saw us climb with our little hero. I hope that they carry positive messages into the rest of their day to all their loved ones after they come across us.
This morning when Anthony was asking about all these new people he would have to add to his love list, I realized that’s it! Just may be what it’s actually all about…. If we are truly loved in our life and have developed the full capacity to love back whole-hardheartedly, is there really anything more we need to accomplish in a lifetime? And if that’s the case, my son has accomplished more in his 14 years than most people I know, including myself. That smiling face is pure love and today I feel so blessed and truly inspired.
After accidentally seeing the video that’s been all over Facebook this week, he asked me about the timelines that I mention….stop walking between 8-10, arms and upper body and heart go in the teens and we will lose him between 12 and 20….” I had to explain these were timelines given to us 11 years ago and he has changed that timeline not just for himself but for many others with his participation in the clinical trial. It was a heartbreaking conversation to have with your child. I asked if he was scared and he said, yes, but lots of people love me. So we played the game.
Yesterday’s hike was awesome. We had a small crew be able to make it so I wasn’t sure how it would go, but it was great. Carrie, Jeremy and their boys came out to start filming (the Kickstarter site has reached $8,430 in less than a week). Dave brought a bunch of foam to add to Anthony’s chair so we spent quite a while in the parking lot but that’s important we do all those things now, not at the Canyon. We made good time once we started going and Anthony is learning how to ask for what he needs. He even asked Todd to get him out and stretch him when DeeDee and I weren’t keeping up.
I continue to be overwhelmed by the support and the far reaching effort this has become. Yesterday we met some great girls on the top and they took our picture. They were so moved they went home and donated. We had so many people on Facebook today already chime in that they had seen us on the trail Sunday. My wish is that their own steps became lighter as they saw us climb with our little hero. I hope that they carry positive messages into the rest of their day to all their loved ones after they come across us.
This morning when Anthony was asking about all these new people he would have to add to his love list, I realized that’s it! Just may be what it’s actually all about…. If we are truly loved in our life and have developed the full capacity to love back whole-hardheartedly, is there really anything more we need to accomplish in a lifetime? And if that’s the case, my son has accomplished more in his 14 years than most people I know, including myself. That smiling face is pure love and today I feel so blessed and truly inspired.
Wednesday, April 2, 2014
A Documentary on Anthony's Adventure!
Dear Friends, I know I have inundated you with the Grand Canyon hike stuff and probably driving you nuts but please bear with me. Two award winning producers, Jeremy & Carrie Simmons, (Travel with Kids, PBS) caught wind of Anthony's story and would like to produce a documentary. They are amazing people who truly "get it" and I would be honored for them to tell our story. They are doing a crowd funding campaign on Kickstarter so PLEASE take a moment to click on the site and watch the quick video. If there is some way you can support us, you will be helping us raise awareness for all boys with DMD. No donation is too small. Please check it out and help spread the word. I would be so grateful.
Click here to see the campaign
Click here to see the campaign
Tuesday, April 1, 2014
March 31st Non Hike: Rest When Needed (so you can go the distance).
Most days I have that little tune from Nemo going through my head on a loop “just keep swimming, just keep swimming…” I‘m not good at asking for help, taking a break, making myself a priority (ever) or any of the other skills required for survival when you are a caretaker. Ironically, exactly one month from when we head to the canyon, and I am going to blog about taking a break. This weekend there was no practice hike.
I guess overall the topic of pacing myself has always been a challenge for me. Not only on the trail, but with big projects project and with life in general. I used to tend to come out fast and furious and burn out before the end. When I used to run half and full marathons for the Run for Our Sons campaign, I learned how training for the race became a great analogy to our life with DMD. It was all about a constant steady pace through the times you have energy and want to run as well as through the pain that makes you want to crawl. Holding yourself back from running when your emotions take over is just as important as learning to be comfortable with being uncomfortable for the tough times. Knowing things will continue to change when you are in both spaces is essential to help prepare for the long haul. I think in DMD we all run in the beginning after the diagnosis but have no idea how long the journey is going to be. Pacing ourselves becomes essential for survival.
So on that note, we all got some great rest this weekend. I was able to hang with some friends who have a son who’s a bit ahead of Anthony in his progression and I can’t tell you the strategies, comfort and confidence we all got from that visit. It helped ease the transition not only hearing how to do things more easily and efficient but also knowing we are not alone and it is going to be just fine.
I spent the weekend working on the logistics such as food, gear, team coordination, hotel reservations and reaching more sponsors. We now have a base camp for the top with a handful of volunteers, a halfway camp with 6 staying for the change out team, 19 going to the bottom and 6 that are strong enough to climb in and out and fill in where needed. We also have several friends and family coming to just day hike and do the final part of the climb out with us.
Now it’s time to get back to the physical part. We are down to 30 days and still have so much training to do! We will be hiking next Sunday @ 8am and I’m hoping we are all renewed and stronger after a little break. I believe we are all still hiking on our own and mentally preparing for the climb ahead. The break personally helped charge me back up and I think Anthony and Oliver needed it as well. See you on the trail and if you see me trudging uphill just know I will most likely listening to that cute little Dora voice singing in my head, “just keep swimming. Just keep swimming…”
I guess overall the topic of pacing myself has always been a challenge for me. Not only on the trail, but with big projects project and with life in general. I used to tend to come out fast and furious and burn out before the end. When I used to run half and full marathons for the Run for Our Sons campaign, I learned how training for the race became a great analogy to our life with DMD. It was all about a constant steady pace through the times you have energy and want to run as well as through the pain that makes you want to crawl. Holding yourself back from running when your emotions take over is just as important as learning to be comfortable with being uncomfortable for the tough times. Knowing things will continue to change when you are in both spaces is essential to help prepare for the long haul. I think in DMD we all run in the beginning after the diagnosis but have no idea how long the journey is going to be. Pacing ourselves becomes essential for survival.
So on that note, we all got some great rest this weekend. I was able to hang with some friends who have a son who’s a bit ahead of Anthony in his progression and I can’t tell you the strategies, comfort and confidence we all got from that visit. It helped ease the transition not only hearing how to do things more easily and efficient but also knowing we are not alone and it is going to be just fine.
I spent the weekend working on the logistics such as food, gear, team coordination, hotel reservations and reaching more sponsors. We now have a base camp for the top with a handful of volunteers, a halfway camp with 6 staying for the change out team, 19 going to the bottom and 6 that are strong enough to climb in and out and fill in where needed. We also have several friends and family coming to just day hike and do the final part of the climb out with us.
Now it’s time to get back to the physical part. We are down to 30 days and still have so much training to do! We will be hiking next Sunday @ 8am and I’m hoping we are all renewed and stronger after a little break. I believe we are all still hiking on our own and mentally preparing for the climb ahead. The break personally helped charge me back up and I think Anthony and Oliver needed it as well. See you on the trail and if you see me trudging uphill just know I will most likely listening to that cute little Dora voice singing in my head, “just keep swimming. Just keep swimming…”
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