So this post has been a long time coming. Fair warning, it’s long, but I believe, totally worth the read.
I want to talk about the awesome of the Macan family. But more specifically I want to talk about the awesome of all the people who helped make the pool a reality for Bo. For those of you who don’t know, Bo Macan is a 7 year-old who has a rare genetic disease that is so rare the National Institute of Health actually named it after him, “Bo’s Syndrome”. His body is a strange puzzle of diagnoses and from what I understand, the doctor’s are often left scratching their heads about how to help this sweet little boy. He has Rheumatoid arthritis, he has Type 1 Diabetes, he has lung disease, he has human growth deficiency. The list goes on and on. Most days, Bo has a hard time getting off of the couch, due to his constant pain.
John and Carolyn are living every parent’s worst nightmare. They have a sick child, who is in chronic pain and they can’t find a treatment that will “cure” him. And I’ll admit this will sound strange, but because Bo is fighting a rare disease they are at even more of a disadvantage than other parents with sick children. The doctors don’t know how to treat what they don’t understand. As a parent, I cannot even imagine what that must be like for them. The incredible frustration of not having a solution to a problem. We’ve all been there before, but for most of us, it’s at work or some other high class problem. For the Macan’s, it’s with their sweet 7-year-old son. He has a problem no one can seem to solve.
To be fair, there are a lot of people in this scenario. Bo, of course, is the lead in this drama and his parents have a pretty strong supporting role. They are for sure winning Emmy’s and Golden Globes for all they do for their family. But these three are not alone. While Bo’s parents Carolyn and John rock the awesome so hard it’s insane, his siblings do the same.
To start Bo is a twin, to his sweet sister Brooklynn. Brooklynn is as healthy as a horse. Bo also has two older siblings, Leksi (16) and Johnny (14). Brooklynn cheers her twin brother on when he has to have home infusions to make him feel better and feels sad when she has to leave for school and he can’t come with. Lexsi, who is a high school teenage girl and could be doing a million other things often misses social activities so she can spend time with her little brother or comfort him when he feels sick. The same could be said for Johnny, who is an active young man and has many things he could be doing, but instead hangs with his little brother.
The whole family is a force to be reckoned with. They are awesome in the most beautiful way. No one who hasn’t lived in their shoes could possibly understand how truly awesome they are.
Let’s start with John, Bo’s dad. John gets up every day puts one foot in front of the other and leaves his house and his sick child to go to work. Every. Single. Day. That takes courage. That takes bravery. I don’t like to leave my kids to go to the store, let alone when they are laying in a hospital. Bo spent over 200 days in a hospital in 2015. 200 days in one year. Unfathomable. Yet, John Macan, goes to work everyday to earn money to provide for his family. He goes to work to help pay for the dozens of medications Bo takes on a daily basis. I’m not sure I could put my shoes on the right feet if my kids were in a hospital. John rocks the awesome so hard it’s crazy. Now, I know if you asked him he’d say he does what every other dad in this situation would do. But Carolyn, who spends a lot of time in the hospital around sick children, would disagree. She sees absentee parents all the time. She celebrates her husband for the rock star that he is and the incredible dad and provider he is for their family.
Then there is Carolyn. The best way I could describe this woman is to use two words…street fighter, and I mean that in the best possible way. I would not want to be a doctor that comes into Bo’s room with no plan of action, because Carolyn has a PH’D in doctor speak. When she talks of Bo’s treatment plans and diagnoses I feel like a toddler. She tosses around terms I can’t even pronounce let alone understand and she knows exactly what she is talking about. She’s so used to all Bo’s ailments that when she talks to someone like me she just assumes we know what she’s saying. Bo’s diagnoses, medicines, aches and pain are her normal. I witnessed Carolyn manage one of Bo’s hospital stays in person and doctors and nurses came to visit…and she was amazing. She fights her butt off every single day to give Bo the best possible care and life she can. It’s inspiring and more awesome than I could every properly explain.
That brings us to Bo’s pool. Bo was promised a pool a little over a year ago and for reasons that I won’t even go into it didn’t happen. Bo picked out that pool and the week it was supposed to get put in, his dreams got crushed in a way that also crushed Carolyn’s spirit.
I suppose some of you are asking, I don’t get it, why is a pool so important for Bo? I could answer that by telling you that the one time Carolyn took Bo to a public pool he got an infection that he had for 2 years. Yep, 2 years, and countless antibiotics to get rid of it, all of which left their mark on this sweet little boy. I could tell you that public pools are a breeding ground of germs that most kids can handle, but not Bo. I could tell you that because of his arthritis he doesn’t get a whole lot of exercise as “normal” activity for Bo causes him intense pain. Swimming has been one thing that doesn’t cause Bo pain. But through this whole ordeal, I learned that Bo himself gives the best answer to that question, he simply said “it makes me feel normal.” Wow!
I am happy to report that a little over a year after Bo’s dreams were crushed and Carolyn and John’s hearts were broken Bo got his pool and it took so much awesome I’m not sure I can do all these people justice, but I am sure as hell going to try.
First, let’s start with Kevin York. This is a man I had never met (I only recently met him after the fact). He is my sister-in-law Jill’s neighbor. She and her husband Kevin are always talking about what a great guy he is and I knew he did pools. So I asked for his number. I called him and he answered. It’s almost as simple as that. I told him who I was and explained the situation. He listened, asked no questions, said very little other than that he needed to make a few calls and said he’d call me back in an hour. He called back 15 minutes later. The only thing I heard was “I can get a pool”. Umm what? I cried so hard when I hung up that phone it was ugly.
This was a person I had never met. He could have told me to take a hike or hang up the phone and never call me back (which several people I called actually did do). He called back 15 minutes later with a pool we could buy at cost. $5,000 cheaper than I had found anywhere else. Then, he sweetened the deal. Kevin told me he’d do the ground work and installation for free. He went to the Macan’s house, spoke with Carolyn, met Bo and even helped with the paperwork and variance we needed from the city to even put the pool in the first place. He even hooked the Macan’s up with a fence guy, Burge Fence who offered to install the fence for free as well. Another person we have never met. Incredible. Through this whole process Kevin York has been nothing but a consistent, hard working, dedicated, true to his word rock star and he is whole nother kind of awesome I didn’t know existed! When I did meet him a hug and a thank you and anything else I muttered out of my mouth seemed pretty insufficient. So if any of you need a pool, seriously, consider this man. He helped to change the life of a little boy and his family in a way I’m not sure even he could understand, but I know the Macan’s will forever be grateful to him.
Let’s move on to Bob Osterlund. Bob is the vice-president of Starr Homes. Kit and Gerry Starr are the owners and they built our house. Now, we have been in our house for 2 years already. When I called Bob, I hadn’t seen or talked to him in over a year. I honestly called to see if he knew someone who could help us build the deck and fence for this project. Like Kevin, I explained the situation to him and he was horrified as anyone would be by such a crazy story. He told me to send him information and that he’d talk with Kit and Gerry and see if there was something they could do. To be honest, as busy as these men are, as much business as they had, I wasn’t sure he’d even remember to call me back.
I was wrong. Dead wrong.
Bob did call me back and he said that his assistant Jen Pircon and their designer Angela Arnone-Orel were willing to host an event at one of their model homes to help raise money for Bo. Now, this event was to be held during the Parade of Homes, so we knew there would be traffic…but Carolyn and I thought, even if we raise $500.00 it would be great. Bob, Jen and Angela took out all the stops for this event. There were raffle items, an incredible bake sale (that I may or may not have sampled from all day), a bounce house and even a face painter for kids. Let’s not forget to mention the feast Angela prepared for all who came. Kit and his family came and several of the Starr employees took time out of their hectic schedule at the busiest time of their year to help make sure this event was a success. Bob was there too. He has worked 40 straight days at that point and incredibly long hours yet he was there…the entire time. Perhaps the most awesome moment of the day was when Bo himself arrived and painted his face two or three times, bounced in the bounce house and got to see people busting their tails to help him get his pool. That day we raised over $800.00 in raffle and bake sale items. However, Bob had secured donations from some corporate sponsors and Starr Homes helped raise over $6,000 for the Macan family pool project. Wow!
Again, Starr Homes and Bob Osterlund are busy people. They have plenty of business and already donate to several charities, but in my conversation with Kit that day I learned something about him and their business, these men truly care about people. They especially care about kids. They rocked the awesome in a way most people think people in their position can’t or won’t and again, I’m certain they could never truly understand the impact they have had on this little boy’s life.
Next there is all the people who donated to the YouCaring page. They are too numerous to name. There were people the Macan’s had known a very long time, people they went to high school with and even people they had never met. I got on there one day and I saw names of people my sister played college volleyball with who saw my posts via Facebook. I saw the name of a dear friend I had made the last year at Sacred Heart where my kids go to school. These people had never met Bo and likely never will. They just gave because there are really good, kind, generous and thoughtful people in the world. If anything, this whole process has been a great reminder of that for me and perhaps more importantly for Carolyn. My heart was bursting, I can’t even imagine how all of this is affecting Carolyn and John. To say thank you to all of those people who gave their hard earned money to help get what many would consider a luxury item for a sick little boy doesn’t quite seem to cover it. These people have kids to feed, activities, braces, college and weddings to pay for, but they took the time and the effort to give some of what they have to help make a family’s life a little better, a little easier and a little more, normal. To all of you that donated…you rock my world. You are the kind of awesome this world needs more of and I know I speak for the Macan’s when I say thank you thank you thank you! You are awesome!
Then there is McCray Lumber, who I never spoke to and don’t know at all but Carolyn called them and they offered to donate all the lumber for a large deck and a fence that the city required. In various estimates we were told it was about $3,000 worth of lumber. They gave it and delivered it all for free no questions asked. They could have easily said no, or said “I’ll call you back” like the other lumber companies I called did. But instead they gave one big yes and they helped too, to change the life of this little boy people call Super Bo.
Then there Seth Kelso and his team. Seth knows the Macan’s from high school. Seth and his team of workers came out not once but twice and worked in torrential down pour one time and extreme heat conditions the next. Did I mention they came from Manhattan, Kansas? Oh, yeah, they did. Seth and his team left behind their families and their day jobs and came to build a deck the Macan family can sit on together to enjoy this life changing experience for their son, and brother.
I wish I had all day and much more time to write the names of every single person who donated or helped make this happen. When I met with Carolyn the first time about doing this for her family she seemed very reluctant. Who could blame her? She has someone tell her this was going to happen for her son before, why would this be different?
To be honest, I’m not sure why it was. I know nothing about pools. I didn’t know who would build the deck or where we’d get the lumber, but something told me it was going to happen. I knew it. I felt it. I think my confidence (which may have just been ignorance) gave Carolyn hope and each time we talked her confidence grew.
I wish I could post the stream of texts that went back and forth from her phone to mine. I laughed out loud every day. I cried a little most days and I prayed my hind parts off that we would not let this family, who endures so much, down.
Kevin York, Bob Osterlund and Starr Homes, McCray Lumber and Seth Kelso and team, that is largely because of you. Your awesome changed Bo’s life. Your awesome has given the Macan family a little peace in the chaos that is their life with a chronically sick child. I’m hoping your awesome will inspire anyone reading this that if they have the means or the desire that reaching out and helping someone in need is always better than the alternative. I am hoping that anyone reading this believes, like I do, that one person can make a difference in someone’s life and maybe even the world.
Bo is the star of this show. He is more awesome than any of us can imagine because he fights the unknown, the unimaginable, every single day. Although, if you met his parents, you’d see he comes by that very naturally.
I’ll close by saying thank you to all that were a part of this story. I think the video’s and pictures below will do a better job than I can of showing you just how much of a difference it has made in this family’s life.
Bo’s laugh in this video alone…I can’t even handle it…#celebr8awesome
This was the first picture I saw of Bo in his pool. Yep, I cried like a baby!
So much awesome in this little boy’s face!
This is the harsh reality for Carolyn and Bo. They spend a lot of time together like this. Bo in bed, often in a hospital, Carolyn at his side, fighting like hell!
Bo after his port had to be accessed for a home infusion; worn out and stressed out, but fighting still!A picture of Seth Kelso and team with the completed deck. The Macan’s now have a place they can hang out as a family as they watch their 7 year old boy swim and feel “normal”. His words, not mine.
If you want to see one of the stories they did about Bo and his pool see the link below
Also, a great article written by the Shawnee Dispatch Chris Duderstadt, see the link below