Sometimes in life we see someone, something and we have sympathy for a total stranger, we connect on a level, if it is just for a few minutes, that we rarely connect with. I’m a believer that often we miss these time. We are too busy avoiding strangers instead of making connections.
I’ve very guilty of this, always busy. Always checking my e-mails, seeing what’s next, seeing what I “need” to see on social media. The time we have to sit back, put our phones down, look around for me is an airplane trip.
I love traveling, I really do. This past year has put traveling to a sudden halt for most of us, but I’m looking forward to doing it again.
October 1, 2019 the Milwaukee Brewers played a 1 game Wild Card Playoff game against the Washington Nationals, in Washington DC. My friend, Jon, has a connection with the Nationals, that part really isn’t important. I flew in the morning of the 1st, we rented electric scooters and drove around DC with really nothing to do. It was awesome. Afternoon came, we made it to National Park, to witness one of the best MLB games I’ve ever seen. After the game we had some fun, that part isn’t important to this story either 🙂
The next morning, I had a midmorning flight from DC to Milwaukee. Pretty routine, morning. Got some Chick-Fil-A nuggets for the flight, easy 90 minutes.
I was one of the last to board the plane, just me, my backpack and some Chick-Fil-A. It was a very full flight, I just went to the back of the plane, saw a family of 5. Dad (35ish), Mom (35ish), Big Brother (maybe 10 yrs old), Sister (8ish) and little Brother (4ish). It was very clear from the beginning, they were having a really tough day. Dad was really struggling, we made eye contact and an instant connection was made. Getting ready for takeoff, it was clear others around me started to get upset with the kids. Rolling eyes, etc. I decided to strike up a conversation with the family. I could tell they didn’t really want to talk, but hey, I’m bored and these other guys on the plane seem like a bunch of stiffs.
So I start with older brother. Simple “What’s up buddy?” He then says, and I’ll never forget it: “I need to go say goodbye to Grandpa.” Hmm, that’s odd I thought, then tears started from Dad. Oh, maybe it’s a funeral, or a grave visit. This is getting deep.
Mom and Dad go all in. Tell me the story. Grandpa is on life support, losing a battle with cancer. The son is a successful business man in Washington DC, and his Dad is dying.
This is October 2, 2019. My mother passed away from Cancer April 25, 2019. I then started talking righ Dad. Looked at him in the eye, both of us crying at this point, told him I know what he’s dealing with. Saying good bye sucks. Told him I did it months earlier. He asked me what I said.
What does a loving son say to their parents? Something we can always think about afterwards, but what about in that moment. Do we say “Don’t go” or something that we have no control of. Do we say “I love you” that’s the obvious one. What do we say? Why did we wait this long to say it if it’s important to say?
He wanted to know. I could tell he’s really intelligent, I’m sure very successful, I also bet he’s never lost for words. But he doesn’t know what to say to his dad before he passes. I could tell it was really important to him.
So, what did I say? I told him, what I’ll tell you now. I knew this would be the last time to speak to my mom, it was 2 days before she passed. I had spent the past few days with him and my father. I went in, hugged her. Told her I love her, then was lost for words. I then said, “I’m going to follow you and do what you always did. I’m going home to my take care of my kids, my wife, your grandchildren.” She smiled and laid down. That was it.
Was that the right thing? I think so. Our job is to take care of each other. My mom always took care of us, I needed to now take care of my family.
The dad looked at me. Really broke down. The mom then told me that is the best advice. Honor your parents, by taking care of your own family. The dad was struggling with did he honor his parents enough. He spent the last 10 years building his own family, running his business. Being a provider. He was struggling, was it a good thing? Was taking care of his family a good way to honor his Dad? I think so.
I have many passions in life, one of the strongest passions I have are baseball cards. For many a baseball card is just a piece of cardboard with a player’s image on it. For me, it’s much more than that. Baseball cards are a great way to connect to a favorite player, connect to a childhood memory or just a great diversion in life.
I have four cards in my collection that mean a lot to me. In the card collecting world, the phrase for this would be NFT/NFS, Straight PC. (Not for Trade / Not for Sale, Personal Collection). I thought this would be a great time to share 4 of my cards and why they mean so much to me!
2018 Topps Update, Ronald Acuna Jr, Photo Variation, White Jersey, Holding Glove.
Fall of 2018 was the release of Topps Update. With a lot of “flagship” releases, I sold quite a bit of boxes. I happen to have a few boxes left in 2019. My mother started to really suffer the early part of 2019. I spent many days in Monmouth over her last few months on this earth. Back in Wisconsin we were building out home and staying in a 3 bedroom apartment. That’s right, our family of 4 kids, 2 adults and 2 dogs was in 3 bedroom apartment. This apartment was really a 2 bedroom as one of the rooms was my office for the baseball card business. We were very cramped to say the least.
One March Sunday Night I just returned from Monmouth, IL to visit my mother. She was not doing well, I came back to Wisconsin knowing her passing was near. I got back to the apartment very late, everyone was sleeping and I was stressed out. I needed something to take my mind off life, then I remembered I had about 6 hobby packs of 2018 Topps Update. Ripping packs is such a great way to relax, and these are “cheap packs.” I thought it would be fun to rip a couple, read the backs and go to bed. My 2nd pack, BOOM.
I noticed something different about this one, it’s an awesome Ronald Acuna Rookie Card Photo Variation! Was so excited about this hit. It was a great diversion, even for a few minutes, on tough times going on in life.
2018 Topps Allen & Ginter Champ Pederson Autograph
In opening hundreds of thousands of packs, I’ve pulled cards that have made me shout for joy, laugh, make me nervous, just about every emotion. But I’ve only had 1 card that I pulled that made me cry.
Allen & Ginter is an annual summer release Topps Set that is known to feature subjects that are non baseball. It has had everything from autographs of actors to a dinosaur tooth in a card!
In 2018 Topps Included, Champ Pederson the Older Brother of Los Angeles Dodgers Outfielder Joc Pederson. Champ has been featured in some advertising with Joc and travels with the Dodgers. Champ happens to have Down Syndrome, same as our son Malix.
In the summer of 2018, Malix was less than 2 years old. As a parent of a young child with Down Syndrome, it’s a lot to process. Like many dads with sons, I’ve always dreamed of having a son that is a professional athlete. When we realized Malix had Down Syndrome, a lot of traditional father dreams change. The minute I saw this card, I came to the realization, that my dreams for my child are not vanished. This card speaks to me loud an clear that Down Syndrome does not limit anyone and having a child with Down Syndrome.
I’m rarely lost for words opening baseball cards, but this pull had me speechless. The collector who hit this card, was nice enough to sell it to me and it’s a staple in my collection.
1983 Topps Ryne Sandberg PSA 10
I realize my passion of cards is not something that everyone in my life shares, but I’m fortunate that my wife appreciates. Michelle gifted me this 1983 Topps Ryne Sandberg Rookie Card for a Birthday a few years ago. I did have a Sandberg Rookie Card, but not in a graded PSA 10.
This is a staple in my collection and a great gift she gave me.
1991 Fleer Ultra Ryne Sandberg Autograph
Summer of 1991, my father (Al) took my brother (Ben) and I to a Cubs game at Wrigley Field. This game was rained out and I was devistated. As we waited for our bus, I went to a chain link fence to see what was going on. To my surprise, my favorite Player was walking out, RYNE SANDBERG!! I was shocked and nervous. I pulled out this new Fleer Ultra Card I had in my holder and he signed it for me.
Ryne signing this card, turned what could have a disappointment of a day into a great day. More than a signed card, this really speaks to me about what my Dad would do for us kids. Like a lot of parents, my parents were very busy people, but they always took time to do something special with us! Creating memories like this is something I strive to do with my own children.
This week I took a huge step to achieving of of my goals. I’m 41, this is a goal I had as a young child. A goal that I really didn’t think I would accomplish, that all changed in 2016, just 4 years ago.
In most every other blog post I talk about our children, especially our youngest child, Malix. Hence the name of this blog. We often make the mistake of associating having children with goals in life shifting. Maybe we wanted to travel the world… then you had kids and your only world travel is now your Taco Bell. (I love Taco Bell for the record). Maybe you wanted to focus on your corporate career, then you met the person of your dreams and wanted to spend nights / weekend with them instead of working late in the office. Basically you had career goals, then something important or “life changing” happens, so your career goals dissolve.
My career goal is similar, but turned out very different.
As a young child, I wanted to be one of two things. 1) Professional Baseball Player 2) Own a Baseball Card Shop. Let’s be honest, #1, went out the window when a curve ball came into play. Entering High School, my career goal changed, I wanted to work for Major League Baseball Club. I didn’t sit back, dream it would happen, I wanted to know the path, what I needed to do and then make it happen.
I grew up the Monmouth, Illinois. Population 10,000, home of Monmouth College and birthplace of Wyatt Earp. It’s truly a fine place to live. I graduated High School in 1997, public school, surrounded by Corn Fields. My graduating class was under 40. I always told people I was “Top 10” in my HS class 🙂
After High School, I started at Illinois State University. The spring semester of my Freshman Year, I sent out letters to every Major League and Minor League Baseball Team in the Midwest. If I was going to work for a MLB team, I better get going! This was before days of social media and e-mail, good old fashion letter it was!
I ended up getting an unpaid Internship In Appleton, Wisconsin with the Wisconsin Timber Rattlers, Class A Midwest League. It was an amazing summer, I worked at a baseball stadium! What could get better. I moved into a basement of another intern and lived like a king on Ballpark Hot Dogs.
My baseball adventures the following 2 summers were great: Summer 1999: Intern Butte Copper Kings; Butte, Montana. Summer 2000: Grounds Crew Wisconsin Timber Rattlers; Appleton, Wisconsin.
I graduated from College in May of 2001 with a Business Degree in Marketing and Economics. I just wanted to work in Baseball, nothing else. No interest in having a family of my own, just baseball. That summer I returned to Appleton to work for the Timber Rattles Grounds Crew. June 11, 2001 I suffered a traumatic accident to my left ankle. Long story short, I cut off my left ankle, all accept the Achilles Tendon. My foot was literally hanging by the tendon. 4 months later I could walk again. Onward in my baseball career. I moved to Phoenix, AZ and worked the the next 14 months for the Oakland Athletics at their Spring Training Facility on the Grounds Crew.
In the fall of 2002, I returned to Appleton, WI for my first “real full time job” with the Timber Rattlers. I was Director of Operations for the next 4.5 years.
During this time I meet Michelle, we started dating and she is fantastic. Before meeting her I never thought I would get married or have a family. I worked at a Baseball Stadium, my life was “complete.”
December of 2006 into the spring of 2007, I interviewed for a job with a Major League Baseball Club. I didn’t get the job, but came very close. In discussions with Club Officials after the process, they were nothing but gracious and positive. The biggest take away is that I needed more experience at a bigger stadium. Shortly after that interview process, Michelle and I moved to Allentown, PA when I got a job with the new AAA Baseball Clue, the LeHigh Valley IronPigs. They were in the middle of building a new stadium. I had the opportunity of a lifetime that would surely land me a job with a Major League Baseball Club.
It just so happens, during this transition to PA, Michelle and I got engaged and married. It is now April of 2007, I work all the time, my wife is wonderful and she is now pregnant. Oh, that will change goals in a hurry. My goal quickly shifted from working for a MLB team to being a husband and now father!
We moved back to Appleton the summer of 2007 where I got a job as Manager of Buildings and Grounds for the Menasha Joint School District. I spent the next 12 years working for public school districts in similar roles.
Fast forward to 2016. We have a nice house and a great job in Fort Atkinson, WI. We are expecting our fourth child. We find out our baby will be born with a major heart defect and likely have Down Syndrome. I encourage you to read previous entries for some more details, this entry is really focusing on my career goals. Malix is coming, my wife needs to take a leave from her job to care for him due to his needs. We are short on money to pay our monthly expenses, I start selling baseball cards online to provide for my family…..
In 2016 I met my business partner online through baseball card buy / sell / trade sites. Ryan Holland in Minnesota. This adventure in Baseball Cards would not be successful without his friendship and business relationship.
Just like that, Malix isn’t even born, but he just turned me into a career path for one of my goals as a child. Goal #2) Own a Baseball Card Shop. I started an official company, (easy to do) and now started selling baseball cards online. I guess you could say I had a virtual shop, at least my basement was looking like a shop.
In 2018, I left working in schools to focus my career solely on selling baseball cards online. In 2019 we moved into our “forever home” in Brownville, WI. (side note, in these adventures this is our 3rd “forever homes” but this truly is our last). I had this baseball card business rocking out of the basement.
2019 into 2020 things got busier and busier for the business. Then covid hit, things got crazy busy for the business and hasn’t slowed down since. Now I have an awesome crew that comes to my house daily to sort and ship baseball cards all over the world, but this needs to move out of the house. It’s growing beyond this home.
So, this week I did it. I purchased a building in Waupun, WI (15 minutes from our home). This building is in the Downtown Historic section of town and I’m in love with it.
The first phase is to remodel the upstairs level (2,600 sq ft) and make it e-commerce center to ship baseball cards in a first class manner with a sleek historic urban feel. I’ve hired an architect to insure it’s done in a top notch manner.
Stage 2 is to have a baseball card shop on the street level. I have no timeline for stage 2, but I’m excited when it will happen. I know it will happen and I know it will be amazing.
Just like that, Childhood Career Goal is going to be accomplished. Why did I get to achieve my Childhood Goal? Supportive parents, great siblings, great education, AMAZING wife, great kids, awesome fellow collectors in our community at Real Breaks, great friend and business partner in Ryan, the great crew of sorters / shippers that work with me, but the turning point was having Malix. Our little guy didn’t take anything away from our family or my career. He completed our family and pushed me to follow my Childhood Goal. I truly believe we are blessed to have Malix and all of our children. Without this family, I would never get to do what I wanted to do my entire life! They didn’t take me away from my goal, they brought me back.
I’m so excited to share the amazing adventures in months / years to come!
Fall, my favorite time of the year. Up until 1 year ago it’s always been a huge transition time for me. Growing up fall marks back to school, the transition from the summer fun.
I always enjoyed summer vacation. Growing up our family always took 1 big road trip every year. We went to places such as Disneyworld, Toronto, Portland, etc. The real adventure was usually in the car ride. We never flew, we always drove. It was fun, real fun. Like all families of the 1980’s, we slept on the floor of the mini van, windows down with no AC, driving 55 on the 2 lane highways. Playing games with different colored cars, pointing out billboards and always looking for a Waffle House sign to know we are in the south.
I grew up in Monmouth, IL. Population 10,000. Surrounded by fields of corn and beans. My mother use to say we have a wide variety here, corn and beans then sometimes beans and corn. I really appreciated the getting out and seeing the country, meeting people who may not look or act like our family. Always a good thing!
Getting back to Fall. I love it, but I think one of the things I loved about it is change. Going to school, then after college I worked in Minor League Baseball. The change of the season to the “off season” or winter work. I liked that for about 4 weeks, then wanted the baseball season to start up!
After working in Minor League Baseball I spent 10 years working in Public School Districts in Wisconsin. I was a Director of Buildings and Grounds. My journey of this blog really starts when I was in Fort Atkinson. The summer of 2017, we were living in Fort, but I knew things had to change for our family. Just not sure how to make the changes. The real truth is, I was scared to figure out how to make the change.
School started in the fall. Malix was almost 1 year old, he was fresh off a heart surgery in January. Michelle was going back to work, Malix had to go into daycare. We basically know no one in Fort Atkinson where we live. We find an in home daycare for Malix. We’ve dropped off kids before at daycares and it’s not easy. But this sucked, really sucked. The lady who provided the care was great, I just knew deep down, I need to make a change where we didn’t leave our almost 1 year old (with Down Syndrome) and a heart surgery with a stranger and other kids. In the end, we needed to work to provide for the family.
The Fall came and went. I was 1 year into this little side baseball card business of Real Breaks. I also was teaching a night class for Madison Area Technical College. Both things I loved to do. I was working non stop, but not getting ahead. The baseball card business was starting to show some real promise. What if I never had to go to “work.” What if I could provide for the family with this side gig and Malix didn’t need to go to a stranger’s house? What if!
The winter came and then spring. I never hated my job, never . I liked it ok, was passionate about it for sure. Really enjoyed a lot of the people I worked with, couldn’t stand some others. Basically a typical work environment. 🙂 We have lived in this community for almost 4 years. I have a crazy idea. Let’s move to wherever we want to live and I sell baseball cards in the basement! Done.
June of 2018, I resigned from a completely secure job with ok pay, great benefits and as stable as one could have. I was going to sell baseball cards on Facebook. We put our house for sale and in July moved our family of 4 kids, 2 dogs and Michelle and I into a 3 bedroom apartment in Lomira, WI. Oh, one of those bedrooms was an office for my business! 3 kids in 1 bedroom, Malix in ours. Let’s do it.
I’ve left jobs before, but this one was especially different for a variety of reasons. The journey with our family (Malix). Looking back on it, I should have taken a long extended leave when he was born and had his surgery. Instead, I worked non stop. I felt I gave everything to the school district and put my families needs second.
In a school district, we were under contracts. My contract was a 2 year contract. The weird part is your contract never really expired. I would get a new 2 year contract every year. So as an administrator I would always have another year on the contract. Essentially anytime you would leave, you would have to break the last year of your contract.
July 1 of 2018 was the start of the second year of my 2 year contract. In the June school board meeting, I was asking for release of my contract effective July 20, 2018. The school board had the option to enforce “Liquidated Damages” up to $1,000. Doing my research the school district of Fort Atkinson never enforced those damages. I understand the idea of doing this so an employee doesn’t leave you “high and dry.” I let gave 6 weeks notice of my leave, so I thought it would not be an issue.
The June board meeting my resignation was before the school district. The wording was read that I wanted to leave. There was nothing discussed, nothing. Then they voted to allow me to quit. Then they voted 6-0 to enforce the $1,000 liquidated damages. I was mad, disappointed, and shocked.
Why was I mad? Because of $1,000, not really. I just poured 4 years of myself into a job and not a single person from the district could even speak up and say thank you. At the board table sits the Superintendent, my boss and some of my colleagues. Not a single one said thank you. Crickets.
I keep the letter from the HR dept confirming the receipt of my liquidated damages as a reminder. Reminder how I poured everything into a job and community. In words of Gary Vee, “no one owes you S*it”. I tell myself I’ll never make that mistake again. I’ll never work for someone who doesn’t appreciate me and more importantly I’ll never not appreciate someone who works for a business I own and run.
The next 3 weeks at “work” were actually ok. My colleagues were very nice to me. I do have some great friends from working there. I found out later that most everyone I worked with thought I was lying about what I was going to do and they “heard” I got a job with another school district. I can see why they would think that. Leaving was fun and scary at the same time. I do miss a couple people I worked with for sure. On my last day, some colleagues brought me donuts and a jar of “well wishes.” I’ve never opened the jar to read the. I almost threw it in the dumpster when I left, but thought I’d keep it for another day.
I just opened a jar I received when I left with phrases from people I worked with. Here are some for good measure. Note, I have never read these. I’ll add my thought for good measure.
1) “I appreciate your sense of humor and open honest spirit.” I’ll take that one.
2) “I appreciate you calling B.S. BULLSHIT” That is hilarious. In school districts people are full of BS a lot of the time. I tended to call them out.
3) “It was great getting to know you and your family. You did an awesome job of bringing new ideas to SDFA. You will be missed” I don’t think I’m missed, but I did bring some awesome ideas.
4) “I hope this move is just what your family needs. Take care and be well.” They clearly don’t believe I’m going to sell baseball cards.
5) “I appreciate your passion for kids and commitment to our mission. Your sense of humor and joy in your work is awesome. I also appreciate how you’ve been a friend to me.” I believe this person. She was very nice to me.
6) “Be your own boss! I hope you find what makes you happy and follow your passions and dreams. Best of Luck!” She’s calling me BS and thinks I’m working for another district.
7) “I wish you happiness and that you may be a blessing to others as you have been to me and so many others here.” I think this one is sincere, that was nice of her.
8) My wish for you is to find happiness and peace with your family. I truly believe you are doing the right thing at the right time for your family’s lives. I wish you the best of luck.” The truth is I should have done it much sooner!
9) “I hope that your next adventure allows you to do what you love, weather it’s baseball cards, a similar position, or something new. I know that we will miss yo and your amazing family A LOT! Thank you for all you’ve done for us!” Clearly she doesn’t believe I’m going to sell baseball cards. Lol.
10) “I wish you amazing success in your new path and abundant joy with your family” That is nice.
11) “I appreciate your love for food!! You were fun to work with. God bless you, Malix, and all your family.” I do love to eat!
12) “I hope your move takes you on a great adventure. Praying for god’s very best for you and your family!” That is very nice.
I’m excited for the change fall is bringing here. The business in going great, I’m buying a 5,200 sq feet building in Historic Downtown Waupun, WI in 2 weeks. The business is going to move out of our house! I love change and growth! So much more on that later!
February of 2017 we left Children’s Hospital in Madison, knowing we would be back. Well, we are coming back this week!
In February of 2020 we realized Malix needed his tonsil’s removed. They were really swollen and apparently it’s common for a child with Down Syndrome to need them removed. Covid came and all “elective” surgery procedures were put on hold. They are back!
For Malix to be able to have surgery he needed clearance from his Heart Doctor. We have always anticipated a second surgery for his heart. The surgery would not be nearly as risky as his first. Great news. The bad news is that after his second surgery he would be on blood thinners the rest of his life. Bad news. Apparently being on blood thinners for many years has side effects… kidneys… etc. I’m not going to pretend I know all, but you get the picture.
Michelle took Malix to our Heart Doctor for the full check up. I decided to stay home and work. I wish I went. Well, Malix did great. He is cleared for surgery, but the miracle is his heart’s gap that needed surgery is closing. That means that the likelihood of surgery went from a certain to likely will never need it!!!
The day after learning this, something hit me. It hit me hard. My mother passed away last spring. Before she passed, she sometimes would say things as if they were fact. It really bothered me, because “how could she know.” We got into many discussions about Malix’s second heart surgery. Anytime it came up, she would tell me with 100% certainty that Malix would not need another surgery, no questions asked. I always thought it was a tatic to make me not worry about it. So, of course, I would argue with her, but she was so certain.
Well, mom was right. She was a strong believer in Christ. I know she prayed like crazy for all of us, but especially Malix. That kid is so lucky to have awesome grandparents, even if he’ll never get to see one of them again on this earth. Love you mom, thank you for looking out for us like you always do!
I am not a patient person, not at all. I acknowledge this as one of my weaknesses, but frankly I think it’s a strength. Malix is not patient either, and after his heart surgery on January 25, 2017, that is just fine.
Our journey, we last left off when Malix returned from surgery. Late afternoon on a snowy Wisconsin Wednesday. Now we (Michelle and I) are in his room with him. Oh, he’s still out and will be for a few days. Hooked up to dozens of monitors and dozens more wires. The biggest thing I could not take my eyes off was his heart. His heart? Yes. He came out with his chest open, covered by a transparent covering. You could see it beat. It was incredible, frighting, crazy, scary, beautiful all at once.
The lead Doctor is Dr. Petros Anagnostopoulos, MD, MBA, FACS. (Dr. A) He’s the Surgeon in Chief at University of Wisconsin, American Family Children’s Hospital in Madison, WI. He saved our son’s life. That simple, that complex. We would get to know Dr A much more in the week ahead. I wrote about him in earlier posts, but he’s worth writing much more about.
After surgery, we were with family in the waiting room. Dr. A came to speak with us. We stayed in with our family. Dr. A was calm, optimistic, but didn’t want us to get to excited. I remember Michelle’s brother, Kevin, thanking him. Dr. A responded “Don’t think me now, thank me when Malix leaves this place.” That stuck with me that the surgery is over, but there is a very long ways to go.
Going into surgery, we really had no true idea how long recovery would be. Days? Weeks? Months? No clear idea. Dr. A never gave timelines. He stuck by day by day steps. Told us some steps would be forward, some backwards. Be ready for days with no steps.
My favorite part of each day of recovery was the morning rounds. Our hospital is a teaching hospital for the University of Wisconsin. Each morning Dr. A would be with a group of students. He would question them on each patient, etc. He would ask the group of students, how do we proceed with Malix. They all had blank stares. “LIKE A TURTLE.” Slow and steady. You will want to push him, because he is a pusher patient, but he’s a Turtle. Dr. A would then tell the others how he made great gains, but would have set backs.
Then the next day. He would say “LIKE A TURTLE.” Malix had great gains, but would have set backs….. same thing the next day. Guess what, Malix is a fighter, impatient, can do it himself and nothing is going to stop him. 3 years later, he’s still the most determined kid I’ve ever met. It’s awesome!
In my mother’s battle with cancer, she would often tell me that it’s “Like a Turtle.” She loved this line and so do I. I believe I received my lack of patience from her. She would agree it’s not a bad thing. Having her pass on April 25, 2019 still hurts. She loved Malix and would love to see his impatience now!
Surgery as Wednesday, on Friday his chest was closed. On Saturday, we brought Trent into to see his little brother. To this point, the kids have not seen him. It was tough to show a child their sibling, laying there with dozens of monitors and medicine cords attached to him. Trent insisted to see him. It was a special moment!
The next day, it was time to wake up Malix. The nurses were shocked how soon he was ready, they shouldn’t have been. Malix does things on his time and that time is NOW! Taking Malix off of sedation was a scary time. Then a cough and breath on his own. We can now hold him. To this point he had to lay flat and still in a small bed. We were able to have the other kids see him. This family picture really captures it.
That picture says so much to me. The first thing you may notice is the cords / wires from Malix. That is nothing. He had so many more before. That was the “light” cord duty. I see a tired family, one that is going through something very few do go through. This experience changed our life, no doubt. Malix is now our inspiration really completes our family from before he was even born.
Just a quick side note, it’s my blog so I don’t need permission to go “preachy.” So many people say something to the effect of “I can’t imagine.” Guess what, I don’t care if you can imagine or not. Frankly I feel a statement like that basically says, I don’t care about what your going through, I’m so selfish that I try to turn every situation about me and I can’t do it. How about saying this instead: “You are doing great. I support you and am always here for you.” I know this will offend some people, but I can’t imagine what it’s like to be offended by it. 😉
Back to Mighty Malix kicking butt. Around Sunday I’m ready to get out of the hospital. He’s awake, he’s a love and needs lots of sleep. He can sleep at home, is what I’m thinking. Sitting in a hospital room all day makes a strong minded parent ask a lot of questions. Well, sometimes care givers don’t always appreciate all the questions. We had a nurse that would get bothered by us always asking why and when. Looking back on it, maybe (just maybe) I asked to many questions. Dr. A sat Michelle and me down and gave the greatest compliment we could get. He told us that as parents we are 3 standard deviations to the right and that nurses don’t always know how to deal with such great parents. Using Standard Deviations to describe someone as a parent if fantastic. I love him for that (and for saving Malix’s life).
Well, the day has come. February 6, 2017. We can go home. We know we’ll be back, but now it’s time to go home and be a normal family. Guess what, normal is boring. I have this little side business that is about to take off, I teach college class one night a week and work a full time job as Director of Buildings and Grounds for the School District of Fort Atkinson.
It’s been a while (2 months) since I’ve updated my blog on here. So much is going on in our crazy world and frankly, I just thought you had more to worry about in your life than to hear of our journey. In the past week, 4 friends have asked me why I stopped. That really encouraged me to keep going and maybe, just maybe people are interested. I started this blog to help me process life, especially the past 4 years with. To give you the cliff notes, we (my wife Michelle and I) have 4 kids. Our youngest was born in 2016 with a major heart defect and happens to have Down Syndrome. Read all about it in other posts.
I feel that there is so much more to write on our journey that has got us to this point. I will continue that journey. But right now I want to jump to the now and ramble a bit.
Like so many people right now I don’t know how to feel. I’m scared that people are getting sick, I’m pissed that I can’t go to my favorite restaurants, I’m frustrated with “E-learning”. I’m really excited our state (Wisconsin) Supreme Court said we don’t have to be stuck indoors anymore, but then I’m scared people may get sick. But I kinda feel like it’s all crazy and whatever I say, some crazy person will go nuts. At the end of the day, I feel lucky as hell I have an amazing wife, awesome kids and a great business partner.
In the fall of 2016 I co-founded a Facebook Group for doing “breaks” of sports cards called Real Breaks. Actually it was called Keep it Real Breaks, but that’s a drama filled story that really doesn’t matter. I co-founded with a guy that I never met in person, we never even spoke on the phone. His name is Ryan Holland. Over the past 4 years we have become great friends. We are blunt, honest, etc with each other. This morning in fact I yelled at him, told him to get lost, etc. Then we moved on to talk about the ridiculous market of baseball cards. I was really in the wrong for yelling and getting upset, but hey, he’ll get over it 🙂
This little fun business adventure got a little crazy over the years. At first I would spend a couple hours a week on it. Put kids to bed and then do cards at 9 pm. yadda, yadda, yadda, it blew up. I quit my really awesome job with the School District of Fort Atkinson, we moved to a village of 500 people of Brownsville, Wisconsin and now I sell sports cards out of my basement. I do not know for a fact, but I am pretty confident I sell more baseball cards than any other company in my state. I am confident that Ryan and I are one of the top 5 companies in the country that sell sports cards direct to collectors.
In our adventures, I have learned something that my mother told me is so very true. She once told me that I am the most passionate person that doesn’t care she ever met. This made zero sense to me until recently. I am passionate about many things, but on some of those very things, I could care less what others think of me because of my passion. It’s screwed up, I know. Basically, having self confidence is a great thing, but I hope it never comes off as being arrogant.
Speaking of my mother. April 25, 2020 marked the 1 year of her death. Losing her hurts, flat out hurts. I would love to hear her try to be positive about our world right now. I’m blessed to have Michelle, my father, my sister and my big brother.
Where am I going with all of this? It’s a great world. I feel this blog helps me relax and keep rocking. Speaking of Rockin’. There is a facebook groups for Parents of children with Down Syndrome. I’m in the Rockin’ Dads, and today joined a Blog group. Turns out it’s a Rockin Moms Blog group. I’ve yet to find a father that blogs, so I’m it!
So what’s next? I am going to work on keeping this blog updated. But I can guarantee the next few years are going to be awesome for the Kulczewski Family. Our kids are doing awesome. Malix (our 3 year old that happens to have Down Syndrome) is smart as can be. To be very honest, him having DS really does not come to my mind. I could care less if he has DS. He’s really smart, fun and independent as hell. My mom would be proud!
In one of my first blogs, I wrote encouraging you to contact me and we would have you over for dinner. That offer still stands and I have 2 dinners to schedule. In this time, reach out. Let’s be friends, virtually at a safe social distance.
Last year I had the honor of speaking at my mother’s funeral. The day before, this came to me. “Meaning to do, is meaning less, without action.” My mother was a woman of action. I like to think I am making her proud.
Thank you for reading, it’s an honor to me if you made it this far. I promise I’ll pick back up with our adventures in 2017 in the next post.
Thank you for checking out my blog. Up to this point I have written about our son Malix’s prebirth, birth and now ready for heart surgery. This takes you to THE DAY. The day is January 25, 2017. It’s a snowy Wednesday in Madison, Wisconsin. I am your ordinary father of 4 kids. Lucky in so many ways. Lucky to have an awesome wife, Michelle, 4 great kids, Trent (7 years old), Lydia (5 years old), Matea (3 years old) and Malix (2.5 months old). I am blessed to have great parents, siblings, in-laws, etc, etc. But now I’m scared as hell.
I’ve always been able to take anything life throws at me. In the past 8 years, we’ve gotten engaged, moved from Wisconsin to Pennsylvania, got married, moved from Pennsylvania back to Appleton, Wisconsin. Had Trent and Lydia. Moved to Fond du Lac, Wisconsin (built a house in Fondy). Quit a job to take another job, that I ended up hating weeks after starting, had Matea, moved to Fort Atkinson, Wisconsin. Rented a tiny house for over a year, moved into a great house in Fort Atkinson, had Malix and now we are here. I know there are tons of blanks to fill in, but you get the picture. Our life has been a bit crazy, but it’s been fun. Stressful, yes, but fun (at least from my point of view).
Now we have decided to go for it all. Put all our trust in a life saving surgery for Malix. Malix has a major heart defect. He has an Unbalanced AV Canal Defect. AV Canal Defects are somewhat common, but the word “unbalanced” is the concern. Big concern. Basically he has no walls in his heart, but there are “nubs” for the walls. But they are not 50/50. The vertical “nubs” are more like 60/40. Not good at all.
Up to this point, I am confident we are putting our son’s life in one man. That man is Dr. Petros Anagnostopoulos. From now on, I’ll call him Dr. A. I’m scared, mainly because I’ve never put someone’s life in one person’s hands. It’s his “job” to rebuild his heart. We are told it’s going to be tough.
Let me pause for a moment. I grew up going to church weekly at Fairview Center United Methodist Church, outside of Monmouth, Illinois. I believe in God / Jesus. I always thought of myself as a very strong Christian. Going into this day, I would tell you that Jesus will protect him. Ok, let’s be completely honest. Did I truly believe that? Maybe to a point. In reality, my faith has never really been tested. I’ve never gone though real tough things. Back to THE DAY.
Malix and Michelle have been at the hospital for 5 days. 5 DAYS! Hanging out, eating, growing, sleeping and staying strong and healthy. Most of those days I would work, then come up at night. The night of the 24th, I stayed all night at the hospital. They have parent rooms. Malix is scheduled to go into surgery in the morning.
Leading up to his surgery we discussed how we would communicate. We decided to use Facebook. I thought this was one of our better choices. Then we could control the message and we could interact directly in our down time. Leading up to Malix’s surgery, we asked friends to wear red for him on surgery day.
The morning comes. I get up, walk down to his room. I can remember exactly what I was wearing. I was wearing flip flops, Indiana Pacers game used shorts (thanks Vance) and a UW Badgers Red Fleece. Michelle is sitting in a rocking chair, looking scared as can be. Crying like any parent would. Looking outside, it’s snowing! Beautiful Wisconsin winter day. Michelle needed to quick shower, she hands Malix to me, I sit down. Why is he so wet? Michelle gets upset at me for asking the question and tells me it’s her tears, that she has been balling her eyes out since he woke and it was just her tears. My job now is just to cuddle him while she quick showers. I hold him up. That kids is a jokster. Our first sign of God for the day. I believe humor is huge. I also believe 100% that God had Malix poop all over me. It was beautiful. Here I am, scared dad, covered in poop. Thanks kid. We get him changed and I am covered in poop. I make the walk to get changed, by all the Doctors and nurses, it was the comical relief we needed!
Changed and back in the room. Waiting for Dr. A. At this point Michelle’s sister Amanda has joined us. Doctor A comes in. Looking upbeat and super excited. “A great day for surgery! My teenage daughters are home with a snow day and I’m really excited to come to surgery!” That was awesome. Here we go, he’s excited, I’m scared, but ready to go.
We are expecting a lot. I’ll keep this really simple. They are disconnecting his heart, building a couple walls, then reconnecting his heart. The reconnected heart will not beat normal. In fact there will be some huge machines he’ll be connected to that will keep his heart going. But the big thing is that the heart needs to have some beat on his own. Without that, it’s all over….
He’s off to surgery. Hand Malix over to a nurse. We have our pager with updates. We just handed our son to have his chest opened and his heart repaired. That was it. Is that it? In reflection on this day, what a moment. Not just any kid, our son. He is now not in our care. Tough stuff. We know a successful surgery will be no less than 6 hours. So we have time. The main keeper of our time was checking out all the awesome support on Facebook. We are truly blessed to have so much support in red for Malix! We also walked around.
We walked outside, we walked inside. We walked everywhere. It was really icy out, so outside was probably not the best venture. We then checked our pager. During the morning we received a few pages. All good stuff.
Michelle found out Chapel was at noon. She really wanted everyone at chapel, together. Everyone was praying for Malix, we might as well go too. In chapel it was Michelle’s Parents (Jim & Kim Casper) and Michelle’s Sister (Amanda Werner) with Michelle and I. I was glued to the pager. Nothing, zero updates during chapel. Frankly I am not scared as hell. But for the first time in my life, I put everything in the hand of god. I thought I had before, but it was nothing until this moment. Then we decided to go back to the room.
Walking down the hall, approaching the nurses station. No nurse wanted to look up and make eye contact. That’s not good. All the nurses were very friendly, but now, they didn’t want to say hi. Then I see one of the doctors from our team on the telephone. Why is she up here? She should be in surgery! This is not good at all.
We go into our room. A nurse tells us the doctor is looking for us. We have not heard anything and now they are looking for us!?!?
The Doctor comes in. She looks happy, yet confused. She tells us right away she has some good news. Here it goes: Dr. A was able to repair the heart and got him back together. Then it was time to hook up his heart. They needed and was expecting a slight beat, very slight, but the machines would take over, needed the slight beat though.
They hooked his heart back up. Nothing, completely nothing. They put his heart back off line and ran it with a machine. I know I’m not using the correct terms, it’s a blog not a medical journal. 🙂 Dr. A then relected, what did he do wrong, why was he getting nothing. He wanted to try again. He connected it again, nothing. Absolutely nothing. This is horrible! Now all the Doctors are very concerned. This Doctor came upstairs to find us. We needed to now be in on the situation. She came to tell us our son may not make surgery. At best they could repair his heart to make it one big chamber. This was actually one of the choices we had. It would give him 10 years (at most) to live, baring no medical advances, or political advances for a heart transplant, since he has Down Syndrome and is discriminated against a new heart in the state of Wisconsin. I’ll get that changed.
Back to our Doctor, she came up to tell us this news. Tough news for any parent to hear, but this isn’t any parent, this is US! Our life, our son!
When she came up, the nurses told her we were at chapel. Our Doctor thought that was the best place for us at that time. While we were at chapel, Dr. A went for it a 3rd time. There is no medical reason why the heart would even have a slight beat on the 3rd time. Then it happened. BOOM!!!! The Miracle Happened.
Not only did Malix have a slight beat, this kid’s heart beat like normal. Our Doctor received this news via the phone while she was waiting for us. While we were praying like no other. I asked how this could happen. Simply put, “there is no medical reason why it worked.” No reason why his heart is beating, no reason why we don’t need a huge machine with him to keep his heart going. He’s a Mighty Guy. It’s truly a Miracle.
Less than 2 hours later, Malix is back in the room. Hooked up to tons of medicine and monitors, but not a machine to beat his heart. He’s still out and will be for a few days. Chest is open and you can see his heart beat. One of the craziest things in the world to physically see a heart beat. Recovery is now beginning. Full successful recovery. I can’t wait to share more soon!
“Would a Heart Transplant be a better option.” Is all I asked.
“Malix does not qualify for a Heart Transplant.” Dr. A responded.
“If Malix did not have Down Syndrome, would we be looking at a Heart Transplant.” I asked. The answer shocked me.
Imagine this, the time December 2017. We are in a meeting, the meeting. In the small room is Michelle, Amanda (Michelle’s Sister), Dr A, his team and myself. I’ve talked about this meeting a few weeks ago in an earlier post about 3 options, 1 decision. There were really multiple takeaways from that meeting. The thing is that each item really needs to be looked at individually due to the magnitude. We are going through the heart issues, then there is a huge wrench in the heart. Malix’s heart needed 2 new walls built, easy right. We’ll the “nubs” to connect the vertical wall is not 50/50. It’s more 60/40, making the surgery team not as comfortable with the procedure. It get’s quiet. The team says this is our only shot. So I bring up the question about a Heart Transplant. I know a Heart Transplant is not something that they have sitting around, but hey, it’s worth bringing up.
Then I’m told something, something 38 months later I still haven’t fully processed. Our son, our awesome wonderful life changing son, is not eligible for a transplant because of the fact he has Trisomy 21. Does having a 3rd chromosome on #21 make it impossible to hook up a new heart? Does having a 3rd chromosome #21 make his body reject a heart from someone with 2 chromosomes on #21. We are at the University of Wisconsin working with the Heart Team. The finest Doctor around is sitting in front of me, looking me straight in the eye, telling me he can not preform a Heart Transplant on my son. Say that again, He CAN NOT perform a needed Heart Transplant on my son.
According to the UW website as of 3/6/20, the median wait time for new heart is 28 days, Malix CAN NOT have a wait time. US News and World Report ranks University Hospital number one in Wisconsin. The Headline for a UWHealth webpage on Heart Transplants reads : “End Your Transplant Wait” We are at the University Hospital, the #1 Hospital. But it’s not up to them. Our family is going to change that.
In Wisconsin, if you have a disability, you will not get a Transplant. If you have Autism, you will be passed, if you have Down Syndrome, you will be passed. This has to change.
Recently I have been reading about Gracie’s Law. Gracie’s Law has passed the House in Georgia, onto the Senate. Essentially it eliminates using a disability to discriminate against someone for an organ transplant. There are 11 states that have passed similar laws. Those states are: California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana. There are 39 of us who live in states where a person with a disability is discriminated against for an Organ Transplant.
To my fellow Wisconsinites (yes it’s a real word, possibility my favorite word) , right now is my action time, soon will be yours. I have been in contact with my local State Rep and Senator. Senator Fitzgerald’s office and I have exchanged a few e-mails. So far they seem interested but need to do more research. I believe that they will be shocked at what they find.
Today I received a call from Representative Born’s Office. They were also very thankful for me contacting them. They were surprised to hear that this discrimination is allowed. Both offices let me know the 2020 session is closing and it would be something for January of 2021. That may seem like a long time, but I am very happy with that.
I said before I haven’t fully processed this yet, I don’t know if I ever will. I have many goals in life. Add a parent in Wisconsin never having to hear “Your child is not eligible for a needed life saving transplant because they happen to have a disability” to the list.
Here’s what I need from you. Get ready. When this bill hits the State, I need you to call / write / e-mail your Wisconsin State Senator or Rep and tell them how this needs to change. Don’t bug them yet. If your friends with Senator Fitzgerald or Representative Born, drop them a note. Tell them they are lucky to work with the Kulczewski family.
If you have Media Connections get ready to tell them of this bill, make Malix the face of change for good in others. We’ve always believed he’s the super hero in all of us.
So far this blog has been in order of our journey with Malix. I am going to go a little off track. In August of 2016 we had a family over for dinner, the last few minutes of the night changed how we interacted with other families that have a child with Down Syndrome, until our family trip to Florida this year (2020). I’ve found writing in my reflection really helps me. So here it goes. First of all, I’ll give the disclaimer these are my own thoughts and ideas as a dad / husband/ etc.
Fall of 2016 a family friend had a friend that had a daughter with Down Syndrome. She put us in touch with them, Michelle met the mother, went to lunch, started to become friends with her. She told Michelle if there is anything they could do to help. Yea, we have friends that have gone through what we are about to go through!
We had the family over for dinner at our house in Fort Atkinson, they have 3 children total. It was a great night, the kids played awesome and we were thrilled how it was going. Then the conversation happened……
Just a couple dads, hanging out on the deck. He turned to me and flat out said that they don’t hang out with other families that have a child with Down Syndrome. He didn’t think it was good for their child to be around other children with Down Syndrome. He didn’t want their child to be “compared” with others. That was it. Simple as that.
They left soon afterwards, I told Michelle about our conversation. She thought I was joking. I wish it was a joke. Here we are, a family of 5, soon to be 6. No clue about Down Syndrome of what it’s like to have a child with Down Syndrome, we are now told it’s not good to hang out with other families that are going through the same thing. So essentially we are on an island. I really felt this way, then Michelle joined a Facebook group for Mother’s of children with Down Syndrome.
From this group, Michelle went to a conference in Nashville Fall of 2019 for Mothers that have a child with Down Syndrome. She loved it, shared it was such an amazing, empowering experience. I’m very happy she went! At this conference, she learned of A Dream Retreat. Florida in February, I’m all in!!!
A Dream Retreat? To me a dream retreat typically would include about 12 baseball games in 6 days. But life has a funny way of changing…. for the better!
We arrived in Florida Sunday Feb 16th and returned Sunday Feb 23rd. I just can’t stop thinking about the week, the best way I can describe it is “blessed” and “lucky.” Let me explain please. To very truthful, I fully expected it to be very fun, but I expected it to be the fun of a bunch of stressed out parents that just needed a “get away” and to feel in the comfort of others who went through the exact same thing. I often make the miscalculation that if someone is in the same position as me (being a father of a child with Down Syndrome) that means to me that they had the exact road to get there. You can read about my road in other entries, but to save you the time basically we found out that our child may have DS, I got really really mad, then we had him and we love him. Still a little confused “why us.” etc, etc, etc.
I’m assuming some of men and women who I met and are fellow parents may read this. If so, let me give you a spoiler alert: I have complete love for you and THANK YOU! Ok, ok, now your thinking, why am I reading this. Here we go.
We land Sunday and do Disney Animal Kingdom and Epcot on Monday as a Family. All good. Tuesday, Trent and I do Star Wars at Hollywood Studios, Michelle and the other 3 do pool day. Cool all around. Wednesday is Dream Retreat day at Magic Kingdom. Let’s live it up.
We go, ride some rides and meet some really nice people. Chat a little bit, etc, etc. Then it hits me, some of these people adopted a child with Down Syndrome….. they CHOSE to have a child with Down Syndrome in their lives. Don’t get me wrong, I love Malix like crazy. But when he was born, I would not have chose for him to have Down Syndrome. The fact is I knew nothing about Down Syndrome.
Fireworks, more Mickey and the day is over. Then Thursday the retreat starts. From now on, I’m going to throw out the order and just try to process it.
We have a decent group of families (20). It seems that a few of us are new to the Dream Retreat group. Being new never bothered me, I always kind of like it actually. There is a group of guys that all know each other, not like just know each other’s name, but have nicknames (mine is Topps), laugh together, etc. Who the hell are these guys…. how do I get in this club… how on earth are they having so much fun… how are they so relaxed?
So here’s the huge light I saw. Some of these guys had very similar experiences as me, found out, got pissed, accepted, etc. But no one, no one were still pissed (at least they didn’t show it). These people are having fun, there is literally no worries.
The retreat was amazing. Our entire family now has life long friends. There were events for just the dads, just the moms and then a couple’s night out. It was like hanging out with lifelong friends. All the kids loved it too. Lydia ended up staying in a friends condo 2 of the nights! All of us were sad when it was over, but excited for the next dream retreat!
Getting to know these guys I learned a couple of facts. 1) they actually care about each other 2) they don’t judge how great of a night by how many drinks they had 3) Some of these guys Choose to adopt a child with Down Syndrome. They (and their wife) made the decision to adopt specifically a child that has Down Syndrome. 4) Most importantly they are there to support each other.
Support. A word that we hear, but rarely really break it down. I know for a fact, that I now have a group of fathers that have a child with Down Syndrome, that are there for me. Such a huge change from the family we had for dinner in 2016.
So many times in life we can make a huge impact on others just by being their friend and relating to their experiences. Passing on this opportunity is really missing something. Flat out telling someone you won’t associate with them because they are going through something you went through is shameful (in my not so humble opinion).
I’m just thrilled I met a group of Dreamers that know this is not an opportunity to pass. They see the value in being there for each others, and truly being part of the Tribe.