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.
Wednesday, July 15, 2015
Tuesday, July 14, 2015
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.
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.
Sunday, July 12, 2015
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.
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.
Saturday, July 11, 2015
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.
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.
Friday, July 10, 2015
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.
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.
Thursday, July 9, 2015
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!
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!
Wednesday, July 8, 2015
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!
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!
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.
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