Beads of Courage 5K/Walk

(Because I have allowed myself to get so behind…..I will be back-tracking for a while.)

In September, our family got to support a great organization. One that has meant so much to us in this last year in particular.

As you might remember…….several months back, during a hospital stay, one of the Child Life Specialists stopped by Cannon’s room. She presented us with a program called Beads of Courage and expressed interest in enrolling Cannon. She showed us the journal where we would keep track of all the medical procedures, pokes, clinic visits, surgeries, milestones, etc. Each had a coordinating, colored bead. She gave me a long string with some letter beads on it that spelled out Cannon’s name. It also had a special “Beads of Courage” bead on it. Then, I spent the next several hours “back-beading” my way through my immaculate notes of the last year and some change. It was quite emotional for me to read them like a book. The journey seemed like a lot while we were going through it but to read it like that…..was a bit overwhelming. I submitted the journal the next day and received hundreds of beads in return. Then, I re-opened my notes and sequentially beaded strand after strand of beads. Tying them all together. The results where this amazingly colorful and incredibly long string. It was beautiful and unbelievable all at the same time. It made me proud of his courage but so sad for his pain. Yet, in the end, we were just really grateful he had this symbol. Like a badge of honor. A way to say to the world…..”This is my story.”

That first day was just the beginning. Because since then, his strand has gotten so so much longer. All the while honoring, validating, and recording his medical journey. Again, we are so grateful.

When we heard about a 5K run/walk to support Beads of Courage, we jumped at the opportunity to participate! I told Mark to take the day off and signed us all up. We would walk the walk as a family and the boys and I would run the 5k. Mark had just had 2 knee surgeries and wasn’t quite far enough along in his recovery yet to be able to run. I was not in the best shape of my life, either. Being in the hospital so often doesn’t exactly allow for regular exercise or eating the best you can. But this was important and nothing was going to keep us away!

In prep for the day, I decided I had to finally break down and buy a double jogging stroller. I have a single and if I ran at all…..I did it when I just had one kiddo to deal with and could use my single. But it was time and I really wanted us to do this race all together as a family. So, I began looking at different stores. During this time, I joined an online yard sale page. And to date, I have bought and sold many things on this great page. One night…..I saw it. Exactly what I needed. A double jogger. For only $75…..it could be ours (most are $250-400 in stores). Luckily, I responded first and got in contact with the seller quickly. I couldn’t contain my excitement and after realizing she was an avid runner….told her all about the race. She had never heard of Beads of Courage so I got to tell her about the org and our personal experience with them. We planned to meet up the next day.

When I arrived at her house with both boys in tow, Cannon was not in a good mood. And when I got him out of the car to make sure he could fit into the stroller, he began having a full-on, all-out melt down. Nice. He went completely rigid, kicked, screamed at ear-splitting level, and nearly knocked me over. It was not pretty. I finally just gave up and told her we would take it. If he didn’t fit in it when we got home and he calmed down…..I would just re-sell it on the same site. I then put Cannon back into the car with his brother and grandmother. The meltdown continued and could still be easily heard with all doors closed and the car on. I tried to re-group and re-gain a sense of calm. To be able to talk to the woman, pay, and thank her. I handed her the money and she stopped me. She said, “You are going to think I am crazy but…..” And then she launched into telling me a story. That she was driving home from work the previous night and was thinking about our conversation and a message from her pastor the last week. And that God really laid something on her heart. That she wanted to give us the stroller and have us donate the $75 to Beads of Courage. She said that she knew that we didn’t really know each other but she wanted us to know that she was with us. I told her how much I appreciated the offer but that she didn’t need to feel like she had to. I talked with her for quite a while to be sure that this was really what she wanted. But long story short, after many hugs and “thank you’s”…..we were on our way home with a new-to-us double jogging stroller. And in awe of the kindness and generosity of a stranger! What a beautiful thing she did both for our family and also so many sweet, sick kiddos that will now be blessed by the money donated to BOC.

When the day of the race arrived a couple weeks later, we loaded up our car. One jogging stroller, tons of snacks and drinks, medical supplies, extra clothes, proof of online registration, sunscreen, hats, sunglasses, Cannon’s beads, 2 excited boys, and 2 grateful parents. Our family headed out to this adorable local farm where the event was to be held.

At the check-in tent, we were able to hand over the donation (yay!), get our race t-shirts, and collect our beads. This is so special! They have you carry a bead during the race. It comes in a little plastic baggie. When the race is over, you return the bead to the organizers with a note of encouragement to be given to the Beads of Courage member in a local hospital. So cool, right?! Townsend was also thrilled that in our take home bag…..there was a string with a few beads of his very own. He loves them and asks to wear them quite often. We met up with my good friend, Karli, and even a couple of familiar faces from the hospital. It was so nice to see how many people came out to support such a great cause!

The 1 Mile Family Fun Run/Walk was first. We went to the starting line where the race director and also the Founder of Beads of Courage said a few words. The starting gun was set off by a precious BOC member. A little boy who has a strand of beads to tell his story, as well. We walked along with many other families, kids, and groups of people. The weather was super nice. A little chill to the air but still warm. And the scenery was beautiful. Mountains behind the landscape of pumpkin patches and tall grass on this little farm. It was a fun, family outing for sure.

Next up was the 5K. I decided to bring up the rear. With our big stroller and a narrow path….it was better that way. The path was a dirt one. With lots of bumps and some patches of tall grass along the way. But we managed to navigate just fine. Mark cheered us on from sidelines. Taking pictures and giving us moral support with each lap. We did pretty well, considering. I think. I don’t remember the time…..nor do I want to. But all things considered….we did good. We had fun. Talking, laughing, enjoying the fresh air, and just being together. My friend, Karli, finished the race and ran back to find us! To finish strong with our little hero. Love that girl!

After the race, we hung around for the awards ceremony. Clapping for the achievements of those who won and/or placed in their various age groups. We turned in our beads with the encouraging notes and prepared to leave. But I had one more thing on my agenda. I wanted to steal a couple of moments with the founder of the org, Jean Baruch. When I did I gave her a big hug and thanked her for this beautiful thing she created. And most importantly, I told her that the world just looks at my son and sees the Autism. But that now, thanks to Beads of Courage, you can also look at his beads and see that there is a whole other journey that has taken over his little life. And that strand records, tells, and helps him own his story. What a gift!

Thank you to Beads of Courage for all they do to encourage these amazing kiddos!

Beads of Courage
10501 East Seven Generations Way
Suite 161
Tucson, AZ 85747
(520)344-7668

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Cannon’s Song of Love!!!

I found out about the Songs of Love Foundation in a totally random way….

I was thinking about what music I should use in Cannon’s soon-to-come Surfer’s Healing 2012 video. And I was drawing a complete blank. The music in last year’s video was too perfect and really set the bar high. I wanted to feel the same way about whatever I used this year.

So, I began a Google search. I Googled things like “hopeful songs,” “inspiring songs,” and “songs about special needs.” I was mostly getting lists that random people or websites had created of such songs. I looked through soooo many different sites and nothing was resonating with me. Nothing was “the one.” But at some point, a link to an organization popped up. Which was weird. I was looking for songs. But I decided to click on the link and see why it was pulled into my search.

The Songs of Love Foundation, come to find out, is a group of songwriters, producers, and performers who create fun, personalized songs for kids going through tough medical treatments. I was completely floored with how cool this idea was! And thankful that these individuals had sought to help children through some dark, dark days in their lives in such a unique and powerful way. I watched a lot of videos and media clips on their site and completely fell in love with their vision and purpose. As will you! Please, please, please take the time to have a look at a quick example…..

Songs of Love Media

I decided to send them an email about Cannon. Most of the kids I was seeing in the clips were like permanent residents in children’s hospitals around the country. And we have spent more than enough of our time hanging out on D5 (shout out to some of the coolest nurses and Child Life Specialists imaginable at our beloved UMC!) but times have changed a bit. THANK THE LORD! So, I wasn’t sure if he would “qualify.” Even though we are still in a tough place and have to daily struggle to maintain his health. Among many, many other things.

So, I sent the email. Outlining ALL of Cannon’s diagnoses and the intense treatment and therapy schedule we maintain. I told them that we would understand either way…..no worries. I was promptly emailed back with a couple sentences telling me that there was a form attached to the reply. Fill it out and send it in. It didn’t say they would for sure do it. Just to fill out the form and send it in. I spent a couple of days agonizing over this short one-page form! LOL! I wanted it to perfectly sum up our AMAZING little man! The form asked about Cannon’s favorite things, his hobbies and special interests, along with the makeup of his family and preferred type of music. We told them about his love of surfing, Chick-fil-A, and Veggie Tales. About his intense fascination with reading and counting…..and how he snuggles in each night with his beloved Curious George stuffed monkey. How Christian music is mostly what he listens to with an occasional rock and/or pop song mixed in. And how music is such a calming force in his life. Truly something we all rely on when assisting him in coping with life and our day-to-day challenges. The question that really had me thinking was “What 3 phrases come to mind when you think of your child?” I have no idea why but this one was a tough one to answer. I eventually settled on that Cannon is most at home when he is “riding the waves,” is our gift from God, and that he never ceases to amaze everyone with his strength, courage, and endurance. Finally, we were asked to include his age, sex, a recent photo, regular hospital, and a contact person at that hospital.

I, both, faxed and snail mailed the completed application (just to be sure) but also included a handwritten page explaining what Cannon had been through. Sorry but when you see “Chronic Gastrointestinal Impactions”…..it sounds like I need to run to the store and simply buy a little laxative. I needed to explain. Those 3 words just do NOT cut it. I sent the app on its way….both ways…..and we waited……..

A month and a half later…..on a perfectly normal Saturday afternoon…..I checked the mail and there it was! I ran from the mailbox back into the house as soon as I spotted the “Songs of Love” address label! I couldn’t believe my eyes! And I just couldn’t wait to see Cannon’s face! And hear a song exclusively written for our precious boy!

I opened the package as fast as I could and threw the CD in the CD player. Cannon started bobbing his head immediately and spun around a few times…..scripting “Mom, shall we dance?” But, as is so common with Autism, he didn’t maintain a connection and walked away….starting to play with other toys. Not appearing to still be listening. And he seemed bothered by the fact that I was following him around and filming. I was a little bummed. But as I continued to re-play his special song…..he seemed to begin to grasp that this was about him. And later, when I began putting together a little slideshow…..he REALLY got into it and is now CONSTANTLY asking me to play it for him. When I do, an ENORMOUS grin stretches across his entire face, laughs begins erupting from his little body, and he dances around the house as only he can. It’s beautiful to witness how much joy this simple song brings to him.

And I will be eternally grateful to Karl Moraski and the Songs of Love Foundation for making this happen for our Cannon! Those guys have brought smiles to a kiddo who doesn’t always know how to show his feelings, laughter to a life that is mostly quiet and complicated. And pure, pure instantaneous joy at the click of a button to a little boy who I may never truly understand. But who seems to get that music touches him. Comforts him. And allows him to escape even if just for mere moments. From his fears and circumstances. Karl….there just aren’t appropriate words to express the level of my gratitude. Please accept my feeble attempt.

I am know blessed to share this great song with all of you. And a little slideshow I threw together to go along for the ride! Thank you Songs of Love! What a treasure this is for our Cannon! Have a click!

https://www.youtube.com/watch?v=-rUk47lZVeI

Songs of Love Foundation
P.O. Box 750809
Forest Hills, NY 11375

email: info@songsoflove.org
website: www.songsoflove.org

A Super Fast Update…..

Oh friends! I know! I do! To say that I am behind in updating y’all on Cannon and our life is such an incredible understatement. You have no idea how many half finished posts I have sitting on the dashboard of this blog site…..just waiting for me to put the finishing touches on them. And how many are in my head. I have a list in a small notebook that I carry with me everywhere. One that I have been adding to….and adding to….and adding to. I add as I have ideas of what I want to write about but…..it has remained just a list and not progressed from there.

The last time I updated everyone, I told you of some HUGE decisions we had made. Decisions that would change our life quite completely. And that is exactly what they have done. Good changes. Yes, good changes. But very, very time consuming changes to say the least. Which have kept me from having the time to devote to blogging regularly. I HAVE begun homeschooling Cannon and also performing the Son-Rise therapy with him. They are both going well and I hope to give y’all more in depth analysis of both quite soon. But since this strives to be a quick update…..I will leave it at that for now.

Now for the status of Cannon’s health. I am soooo happy to report that overall…..it’s pretty good. About 3 weeks ago, we had a bit of a breakthrough. One that I almost didn’t want to admit was happening for fear that progress may subside. Silly, I know. So, here’s the news…..Cannon is not fighting us too terribly badly anymore when we perform the daily “flush” of his colon!!!!!! It is no longer a 3 man job! And the second person doesn’t have to muster every ounce of strength in their body to keep him still enough for the other to get the job done. They can just kneel across from me as we lay Cannon on our towel-covered ottoman daily. And help to brace his upper body, keep his hands away from the button, and stabilize his trunk area. He gets upset when I go to open and close the button. And when I screw in the tube. He usually tells me that it hurts and tenses up pretty good. Some days, for no apparent reason, the button is hard to open. And those days are rough because he gets VERY upset. But everyday now, he relaxes when I begin to push the solution. Sure. He gets whiney and squirms when I go to unscrew the tube and close the button but progress is progress. Not sure how long or if the flush could ever just be a 1 man job but we are so thrilled with Cannon’s current progress…..we don’t care! We generally distract him with a favorite show or his beloved television music channel (“The Spirit”) and that, for now, is doing the trick. He also is adjusting to the cramping that occurs once we run him back to the restroom. The screaming is more just loud grunting or yelling now. Which is also quite an improvement! YAY FOR CANNON!

There has been some difficulty with 2 things, though. Frustration with his body (we assume that’s what it is) has lead to more aggressive sensory behaviors. For example, Cannon sometimes hits his head purposefully into walls or objects. We have been taking him to a chiropractor for some time now and he is helping us with this issue. The first and most important being to try and keep his neck and back stable and in alignment. This helps him be less reactive, in control, and also to sleep better. We are doing exercises and massages on his neck to try and strengthen the muscles and keep him from “locking up.” The second medical issue Cannon is having is that he has become quite Anemic. The flush is flushing out a little too much. And Cannon’s body is having trouble getting what it needs and retaining it before it gets flushed out of him. His lab tests showed stats like 2% iron absorption and a score of 9 in terms of his iron level when it should be between 22 and 132. So, he is now taking a supplement and we will be doing regular blood tests to monitor his progress.

So, that is the scoop! A quick one. Now, I get to right a F-U-N post!!!!! Watch out cuz it’s comin at you in just a few minutes! SO EXCITED TO SHARE! 🙂