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!
Wednesday, July 8, 2015
Monday, July 6, 2015
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……
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……
Wednesday, February 4, 2015
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!
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!
Sunday, January 11, 2015
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.
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.
Friday, December 26, 2014
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.
After getting over the shock, horror, denial and anger…I began researching. I spent a week gathering resources and researching options. After much due diligence, just before the holidays we interviewed the lead surgeon that will be doing Anthony’s surgery…. Dr. Schrader @ Phoenix Children’s Hospital.
The risks are very intense and although we are very educated and aware, I think they are better left off. There is no denial, just a decision to avoid giving certain possibilities more power. We are however, taking every precaution and are putting together an all-star team. There will be two orthopedic surgeons working in tandem to get him off the table as fast as possible to minimize complications. There will be our trusted pulmonologist, Dr. Woodward, and his team, to get him off the ventilator as soon as we can after. There will be an amazing cardiologist Dr. Ellsworth on standby to monitor his heart the whole time. The surgery will take about 5 hours. He is expected to be in ICU for a few days if all goes well, in the hospital a week or so after that and then up to two months at home.
When we visited the Dr. I tried to get Antony to go for a ride with one of the staff and he said no. He wanted to hear. I tried to argue and he looked at me and DeeDee and said, I want to hear the questions and be in the discussions. The Dr. did a great job of being sensitive but he still listened to things no kid should ever have to hear and worry about. Later he said he was scared. I said, yes buddy. It’s pretty scary. But we are going to rock this like we do everything else. He asked “Mom can I say a bad word?” I said “Sure buddy.” He said, “yea… I’m kind of a bad ass”. Yes, AC you sure are. You are kind of a bad-ass.
And of course his first concern was hiking and traveling. I assured him that was our new focus, to get him back in that hiking chair as soon as we can (he has his sights set on Humphrey’s Peak in Flagstaff and Yosemite after that). The surgery is currently scheduled for March 11th however they are looking for a sooner date if possible. Although that’s a bit far out for my comfort, there is a lot of work we need to be doing from now until then to prep AC for the best possible outcome.
I could go on about how unfair this is….how terrified and pissed I am. But I know in my heart the truth. Life yields suffering. We all have it. It comes in many shapes and forms and for every person I know who hasn’t had this painful of a trial in their life; I know so many more that have. I don’t feel especially picked on by the universe nor do I necessarily think that God chose us for some reason. I simply feel it is what it is. We are going to be very challenged and we are going to grow because of it. And I think that there will be times much like on the trail where we just don’t think we can take another step. And then we will. And we will take another after that. Because that’s just what we do.
And in the end, there will be stories of fear, ugliness and hardship. But I think there will be even more of love: big, huge, break your heart wide-open kind of love. This may just be our finest hour. And when we look back at the path behind us, and we are on the other side, we will hopefully have some awe, faith and compassion in our hearts that wasn’t there before. But I guess we will see. I guess that’s why it’s called an adventure.
I will keep you updated. In the meantime, when you think of us, send us some light and love for a safe journey…. because it does help. We feel every bit of it. And as we learned in the Canyon, we can't do this alone.
Friday, November 14, 2014
Being Awake..... the night before.
Time to rock and roll!!!!! Emails out to the team. Check. 15 PB & J’s made. Check. Bags packed and gear organized. 20 oranges sliced and frozen, maps printed, contact lists sent out. Check. Check. Clothes laid out so we can dress and jump in the car while it’s still dark.
We love this!
The family’s eating carbs and chatting it up about all the logistics. Anthony is too excited to go to bed early but has to. Tomorrow will be just under 20 miles in hopefully less than 10 hours. I’m taking my therapeutic dose of motrin. Chris and DeeDee fixed up his chair. Love and joy fills the air tonight.
Once again, just like the canyon, what comes to mind is being present. Taking in every minute…. this is what it’s all about.
Life is precarious for everyone. We have to be vigilant and open to what it’s trying to tell us.
Many of the parents in our community live with one foot in their son’s grave. Understandably so, I have too. But Anthony has taught me that if I am living in the past pain of the diagnosis or the loss of my hopes and dreams of the way I thought it should go, or I’m living in fear of the future and what can happen next, then I’m NOT in reality.
And if I’m not in the reality of the present…..I might just miss the damn whole point.
Being awake is one of the greatest things I have gotten from this unexpected path. I can’t wait to see what tomorrow will bring. Whatever it is…. I will be there. And better yet, I will be surrounded by lots of folks I adore who will be sharing those very same moments...feeling every step of the way.
We love this!
The family’s eating carbs and chatting it up about all the logistics. Anthony is too excited to go to bed early but has to. Tomorrow will be just under 20 miles in hopefully less than 10 hours. I’m taking my therapeutic dose of motrin. Chris and DeeDee fixed up his chair. Love and joy fills the air tonight.
Once again, just like the canyon, what comes to mind is being present. Taking in every minute…. this is what it’s all about.
Life is precarious for everyone. We have to be vigilant and open to what it’s trying to tell us.
Many of the parents in our community live with one foot in their son’s grave. Understandably so, I have too. But Anthony has taught me that if I am living in the past pain of the diagnosis or the loss of my hopes and dreams of the way I thought it should go, or I’m living in fear of the future and what can happen next, then I’m NOT in reality.
And if I’m not in the reality of the present…..I might just miss the damn whole point.
Being awake is one of the greatest things I have gotten from this unexpected path. I can’t wait to see what tomorrow will bring. Whatever it is…. I will be there. And better yet, I will be surrounded by lots of folks I adore who will be sharing those very same moments...feeling every step of the way.
Wednesday, November 12, 2014
Cultivating Trust on Holbert Trail
Sunday we practiced Holbert trail which is the last and most technical of the 4 peaks for this coming Saturday. What an amazing day. I guess if I had to pick a lesson or theme for this experience, I would have to focus on trust. This trail is harder than anything we have ever carried him on. It’s all rocks and for a hiker more of a scrambling situation than a trail. It’s slippery and takes grace to navigate on foot let alone carrying my son in a chair. I had to trust. And more importantly, Anthony had to trust.
As always, taking my lead from my kid, I got comfortable in the hands of our volunteers. I watched as they discussed who would do what, who would watch for what and when it got tricky, what steps were coming up when. There was a lot of exposure. He will need a helmet. And there were some times where he held his body funny trying to compensate for the positions they had him in. We will have to address that with more foam on the chair and carefully placed straps.
All in all, it was a beautifully cohesive experience. Watching the synergy that developed with each step was really a sight to see. Once again, I was reminded that we are stronger as a village and when I hog the responsibility and gravity of the extra work, I rob others of an amazing opportunity to give and by proxy, receive.
Watching Anthony speak and advocate during the hike as to what he needed was awesome. Watching him trust others to meet his needs was a reassurance that I will always have support and so will he. And more importantly, that he will navigate getting that support himself.
My wish for him is that he learn to get all his needs met, physically, emotionally and spiritually. There is apparently no shortage of folks around him for him to connect to for any one of those areas. Although there is much in his life he can’t control, experiences like this hopefully bring home the message to him, there is just as much in his life that he does have power over and he needs to take it.
To paraphrase the poem Invictus, he is the master of his fate, he is the captain of his soul. That lesson applies to me as well. There are so many times I feel so helpless when it comes to our life so I too have the choice to accept the things I cannot change, and pray for the courage to change the things I can. Giving my son opportunities to build trust for others not only empowers him but also helps him learn to be the captain of his life…… and I’m beyond grateful for all those who help support that.
As always, taking my lead from my kid, I got comfortable in the hands of our volunteers. I watched as they discussed who would do what, who would watch for what and when it got tricky, what steps were coming up when. There was a lot of exposure. He will need a helmet. And there were some times where he held his body funny trying to compensate for the positions they had him in. We will have to address that with more foam on the chair and carefully placed straps.
All in all, it was a beautifully cohesive experience. Watching the synergy that developed with each step was really a sight to see. Once again, I was reminded that we are stronger as a village and when I hog the responsibility and gravity of the extra work, I rob others of an amazing opportunity to give and by proxy, receive.
Watching Anthony speak and advocate during the hike as to what he needed was awesome. Watching him trust others to meet his needs was a reassurance that I will always have support and so will he. And more importantly, that he will navigate getting that support himself.
My wish for him is that he learn to get all his needs met, physically, emotionally and spiritually. There is apparently no shortage of folks around him for him to connect to for any one of those areas. Although there is much in his life he can’t control, experiences like this hopefully bring home the message to him, there is just as much in his life that he does have power over and he needs to take it.
To paraphrase the poem Invictus, he is the master of his fate, he is the captain of his soul. That lesson applies to me as well. There are so many times I feel so helpless when it comes to our life so I too have the choice to accept the things I cannot change, and pray for the courage to change the things I can. Giving my son opportunities to build trust for others not only empowers him but also helps him learn to be the captain of his life…… and I’m beyond grateful for all those who help support that.
Subscribe to:
Posts (Atom)