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They Call Me SuperBo

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The following post is from author and storyteller Ethan Bryan.

My nephew has a cerebral palsy as a result of a very rare congenital malformation. After learning of his diagnosis, my sister and brother-in-law searched online looking for support and stories of others with similar stories.

They found Go Shout Love (www.goshoutlove.com). Go Shout Love features stories of families who have children living with rare illnesses and designs t-shirts to help raise funds to support those families. (Unfortunately, Go Shout Love no longer is operating as a business.) My sister was exploring the site when she found the story of Bo Macan.

“Do you know him?” my sister asked in an email, with a link to Bo’s story.

I clicked the link and read Bo’s story and that’s when the crazy idea hit.

I should write a children’s book about Bo.

The idea was so loud and so strong and so completely unexpected.

The only thing I knew about children’s books was they require illustrators. I can barely draw passable stick figures. But I know myself and I knew this idea would not leave me alone, so I took the next step.

I emailed Bo’s mom.

So. 

I know this sounds weird, and I’m not exactly sure how to go about it.

But…What if I wrote Bo’s story as a children’s book and then found an illustrator and then sold copies of the book to help with your medical costs?

Would you and your family and Bo have any interest in that?

It’s just a thought.

Take care.

I thought that would pacify the idea.

I was wrong.

Carolyn, Bo’s mom, replied.

Yes! How in the world did you find us?

Over the next week, through emails and phone calls, I learned more about Bo and his journey.

“Well, we named him after Bo Jackson, because we are pretty big Royals fans and my husband loved watching Bo play.”

I, too, am a big Royals fan. I, too, loved watching Bo Jackson play. And that’s when the storyline idea hit.

I spent hours trying to find a way to connect with Bo Jackson, knowing I’d need his approval to move forward. I sent dozens upon dozens of emails to all kinds of websites and heard nothing in response. And then, one afternoon, I got an email.

I spoke with Bo and he is fine with you including his story and image in your book. We would need to see the image and story prior to publication to approve. 

Thanks!

I then contacted the Kansas City Royals to learn about the process for getting approval of using the Royals logo in the story, and they put me in touch with lawyers and Major League Baseball. And both the Royals and MLB were incredibly helpful and generous in answering questions and offering advice.

Only one problem remained: I still couldn’t draw. I still didn’t have an illustrator.

So I contacted my alma mater, which I cannot help but call Southwest Missouri State University, and sent an email to the graphic design department, wondering if any seniors needed some kind of last semester project before graduation. The head of the department replied and let me know he’d pass along word of my story to his students. A few days after that, Wilson sent me an email containing a link to his portfolio. We agreed to meet at a coffee shop and visited and he graciously agreed to tackle the illustrating side of the project.

For free.

And that is how They Call Me SuperBo started.

Every single step of the process was intimidating and filled with great ignorance.

Wilson not only illustrated, but helped sharpen the storyline. His illustrations were perfect for the project.

The Royals and MLB were patient in answering questions and helping navigate the legal issues of licensing and publication.

Goldminds Publishing generously agreed to bring Bo’s story into the world.

They Call Me SuperBo will have a one-time print run with all proceeds benefitting the Macan family. To order a copy, make a donation via this website before Thanksgiving (http://macanithappen.com/make-a-donation/). The cost of publishing the book is around $7. I’d recommend a donation of $20.

Or $200.

Or $2000.

The books should be available in time for Christmas. Or New Year’s. Definitely before Opening Day.

Spoiler alert.

My favorite line in the book comes on a two-page spread near the end.

“But strength is more than just muscles. Strength is having the courage and the hope to face tomorrow, even if it’s going to be hard.”

Life is full of serendipitous encounters and incredible opportunities.

Sometimes they start with an idea so loud that you cannot ignore it.

Thanks to this idea, I have made several new friends, and that is something to be truly celebrated.

 

Ethan D. Bryan loves to write stories about baseball and life. He has published six books, including one other children’s book, and is currently working with Baseball Seams Company on a new project, “America at the Seams.” He is still trying to find a way to play baseball for the Kansas City Royals.

Major League Baseball trademarks and copyrights are used with permission of MLB Advanced Media, L.P. All rights reserved.

To see more of Wilson Tharp’s art: http://wilsontharp.com/.

To see other books published by Goldminds: http://www.goldmindspub.com/.

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Bombs for Bo

Who wants to hit some softballs?!?  Come out to Shawnee mission North Baseball field, you can hit for $5. It’s going to be so much fun. Bring your family and your friends! 

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October 24, 2016 - 10:12 am

mike stoker - Great day swinging for the fence for such a great cause. Terrific family. God be with you Super Bo. Sincerely from the Fireballs Softball this team.

GO SHOUT LOVE FOR Bo

 Hi everyone , we’re so excited and honored to have been picked for the November family, for GO SHOUT LOVE. Please join us November  2nd from 6-8 at the Garment District for drinks, food and DJ lazer. Come out and purchase one of these amazing t shirts, that GO SHOUT LOVE designed around our little fighter. Come out and support SUPERBO. #superbo #macanithappen #goshoutlove #goshoutloveforbo

 

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Weird what you notice

Bo hasn’t felt great for a few days, we were trying to keep our head above water at home. Yesterday we had to come in to the dr to figure some stuff out. We parked I get my pale, small 5 year old in his stroller because he has no energy  to walk, and his legs hurt. I put all of his stuff in the stroller my back pack on and his mask on and we roll out. I noticed as we were walking toward the elevator a lady, a mom and her son around Bo’s age maybe a little older, looking at us. No big deal… Until I look at the mom and she won’t look at me, no smile, no what floor do you need, nothing. Instantly I felt sad, sad because she feels sad for me. That’s why she won’t look at me! Sad because what is going through her head was oh man that is sad, look at that little boy, that is around my sons age and he is sick. Not flu sick, he must be really sick. Ugh, I felt sad because this mom who is supposed to be supporting me and giving me a very small smile, is scared to death to look at  me. Why? Here’s the thing, please please don’t feel sorry for us, is this the way you pictured your life? Absolutely not, would I change it? I would make him healthy, I wouldn’t change where we have been and what we have been through. That’s what makes us a family, a very close family. That’s what makes my big kids, compassionate, humbled, grateful, and thankful to be part of this journey. Is it ideal of course not. But please if you see me and my son no matter how he looks or what he has on his body or his face, just smile at us. I promise you there 19 kindergarteners in his class that except him and love him, the adults can too.  

 

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October 7, 2015 - 8:55 am

Kelly M - I’m sorry that happened. You deserve smiles, hugs, shoulders to lean on and all kinds of support. I wanted you to know we are praying for Bo with our boys at night. Sending our love.

To the lady sitting next to me at the pool…

For the most part I  always try to keep my opinion to myself. I mean everyone has one and its great to have your opinion, but… there is also a time and a place to voice your opinion.   You know those people who are always throwing theirs around and it has to always be right, we all know those people.  last week Brookie and I are at the pool and I was minding my own business laying in the  zero entry, watching my daughter enjoy the sun. WE NEVER JUST HER AND I GET TO GO. SO IT WAS NICE. these 2 lovely ladies are sitting next to me.  No big deal, until I hear this one mom, started complaining about life.  I get it, I do. Until she started complaining about how she couldn’t believe she had scheduled her kids swim lessons for 9:30 am, which was right in the middle of her yoga class, that she refused to miss. then she proceeded to say how she hated summer and how her kids were out of school for as long as they are, she actually said it is ridiculous how long summer is, and it cuts into her free time. As I sat there and listened to her, I couldn’t  help but feel sorry for her. I was thinking to myself, I am pretty sure she chose to have children, why have them if this is how you feel. think about how her children would feel if they heard her talking like that. It made me sad, but then it also made me angry.  I had to remove myself from her surroundings, but not before I kindly walked our and said.  I hate to interrupt your  poor me sob story, but maybe you should be thankful for what you have, your family, your heath, Because someone I know is burying their son this week and would give anything to take him to swim lesson, I then said she would gladly miss a yoga class to spend one more day with her son. I got brookie we got in the car and I cried the whole way home. I was so angry at her, at people, at life. Why are people so selfish??  Do people really think we picked this for our kids, don’t you think in one second we would take all of the fear, hurt, pain, anxiety, the unknown away from our kids. This is what most people don’t understand.  I promise you, you will never hear me complain, about anything.  Well maybe I may complain a smidge to my hubby, but about having to go to the store, things like that.  Not about how my kids made me miss my yoga class, BELIEVE ME I would Love to go to a yoga class, but I can’t right now and that’s ok. As I sit here watching my 5 year old in the hospital as he sleeps, I try to remember I can’t let people like that get to me. If people only knew what its like, NEVER in a million years did we plan for this. never did I think my other kids would live the life of having a sick sibling, who plans for that, how do you prepare for that? you don’t, you just take one day at a time, NEVER did i think we would divide and conquer in ways that include many many hospital stays and our family and friends jumping in to help with everything.  NEVER did I think I would attend more kids funerals then adults. NEVER did I think I would have to explain death in such a way that my 14 year old can sleep knowing Bo will be with us in the morning. Can you imagine, can you even wrap your brain around that, about how My kids feel. People tend to get caught up in their own lives and forget to ask how are Leksi, JOhnny and Brooklynn doing.  NEVER can you prepare yourself for that, NEVER can I assure my Daughter Bo is going to go to high school. Its heart wrenching and its NOT fair. So… before you sit anywhere in this world and complain about the children you chose to create and vowed to take care and care for and teach, that trust you. Please think about how much worse it could be. I can promise you that lady would appreciate her life so much if she spent one day with us, with BO, She would see how my kids appreciate the little things in life, how they take in all of our little life things that we get to accomplish as a family, a Royals game that all 6 of us get to attend.  WE have NEVER been to a movie all 6 of us as a family. Those are the things people don’t understand! SO please hug your kids and try to complain less about everything!!

 

c

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Is it this or is it that?

for almost 8 weeks, I have had the what is wrong with me moment at least 3,456 times.  Why am I unable to get up and do what I need, why am I unable to get things done, why am I unable to feel happy, why am I unable to feel relief!?! I keep asking myself these questions daily?! What is wrong?  Am I depressed, I am tired, what in the hell is it!? I feel like I am making excuses for myself more then I should be. I feel like life is going forward and ours is at a stand still?! It’s those kind of days that I just can’t wrap my brain around things, around life?  I have to tell you its the worst feeling In the world, the unknown  the what if’s,the maybe this will work, the things will be better tomorrow. Will they? The past 8 weeks I have started to realize so much about people and life.   I have lived the hospital life for 5 years!! 5, every single time Bo is there I am there. Please don’t tell me how amazing I am, it is my job, I chose to have children. I wanted children so it’s my job as a mom to stand by my son! I hope most everyone would do the same?!? Your wrong, some people don’t! Some people wish they had “sick” kids some people want everyone to think there child is really sick, I promise you I have seen it, I have lived it. Why the hell would any parent want to have to do what john and I do, day in and day out, why?! I have to believe that the fight we are fighting is such an amazing one, we will never give up we will not stop, I don’t care if we have to travel to the ends of the earth. No please don’t say good job, say that’s  right, that’s what I should be doing as Bo’s mommy! That’s what I would hope most every parent would do!?! Again the past few months I have had to remind myself, I can only control myself, my family. I have to remember if tomorrow when I get up if what I was supposed to do like go workout or go to the store, if doesn’t work because my son only slept 2 hours, and his blood sugar was 567 then Dropped too 67 and I had to watch him breath all night, well that’s ok I can workout the next day! I have to remember its ok, stop being so hard on myself and I can’t let the stupidity of others get me down! I know what goes around comes around and shame on those who aren’t doing what they are supposed to  be doing! As long as I know I am doing what I am supposed to be! I have to believe that I am doing the best I can, for all of my kids and my Husband! I refuse to let the ignorance of others ruin my day. I can’t control it, I can’t let it control me, I have to believe what goes around  comes around! I have too!!

C

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Life

There have been a ton of things going on for our little man lately…many fundraisers and amazing people in our life taking the time out of their life and away from their own families.

In January our good friend from high school, Derek McQuinn, professional wrestler and owner of  Team Fitness, approached me about a wrestling fundraiser he wanted to put together. It was so much fun and Bo was able to attend the last part of it.  Seeing him in the ring during the main event was truly priceless. There wasn’t a dry eye in the house. I can’t thank him enough for his time and effort on the event. He handled everything. It was amazing, he is amazing and we thank him from the bottom of our hearts.

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Currently, our life long friend Rodney, who is a big time hunter is doing an online Redneck Raffle for some amazing prizes. He is busting his butt to get the word out about Bo. He is unbelievable. It’s amazing to me, our support system. I always worry people will get tired of hearing about Bo, about his day to day struggle.  His day to day struggle is real, so real I know people have a hard time understanding our struggles.

Here is an example. Last week for Valentines day, Brookie and I were making stuff for her class. Bo wanted to help so, I of course, let him. He asked me if he got to go to Brookie’s party. I had to tell him, “I am so sorry honey but you can’t go.”  He didn’t want to help any more. Friday morning as I was getting Brookie ready he said, “I just want to go to a party.” I was heart broken, for him, for me…then I just got angry. It’s so unfair for him. It just isn’t right for my 5 year old to have to struggle everyday with his health and now he is sad because he can’t go to a party. I hate it.

So here is one of the many reasons we’re doing all of these fundraisers. Obviously theses fundraisers help with our medical expenses, but for over a year now I have been researching a diabetic alert dog, which will benefit Bo in many ways.

He will have a companion, a constant furry friend who is always with him. The dog will go every where Bo goes – to the doctor, the hospital, to get IVIG, to get blood, to the movies. Any and everywhere Bo goes, this dog will go. And it’s not like he really gets to go anywhere, which is why this is so important. He needs a friend!!!

Another benefit is that this dog will be trained to night alert, most diabetics die in there sleep, they get too low and just never wake up, which is why I check his blood sugar at multiple times a night for my peace of mind. This dog will be trained to ring a bell at night that will ring in our room, so if he is low or high the dog will sense that. It really is amazing. It will not change the fact that I will still check him. I have done it for 4 years now and I don’t think my mind could ever actually sleep through the night, simply because it’s all I know. This could be life changing for Bo. He isn’t your typical 5 year old. He misses out on everything and it’s terrible as a parent to have to deal with the heartbreak that comes from that.

That brings us to kindergarten. Brookie will be starting kindergarten in the fall, but Bo will not. As a mom this is one of the hardest things I have ever had to do. For the sake of his health I know I am making the right decision, but socially it sucks. I can’t even explain it to him yet because he won’t understand. I never thought in a million years the day I brought Bo and Brooklynn home, I would ever have to make a decision whether or not one of my twins could attend kindergarten. That’s not how it’s supposed to happen.  IT TRULY BREAKS MY HEART. The Shawnee Mission School District has been great about working with us but it’s still really hard.

I honestly try not to be a downer all the time. I think for the most part I do pretty good, but believe me if everyone knew exactly what our day consisted of you would be exhausted just reading it, let alone living it. Divide and conquer is all we know as a family.

I almost forgot…to all of our amazing friends who brought Bo valentines, ALL of the amazing teachers at Roesland, who’s entire classes made him valentines – thank you so very much. It was truly amazing!!

C

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February 23, 2015 - 9:23 pm

Elaine Miner - When Brooke starts kindergarten, can the district start a FaceTime session so that he can interact with the other kids? It might help if he can at least join in on some of the activitities even if it is on screen. It might not quite be the same but it might help him not feel so isolated while keeping him safe. He could share some friends and meet some of the same kids. You might ask the district if that is available.

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