Saturday, May 23, 2009

My Kindred Spirits

Since 2003, I have had the honor of speaking to the "Peer Insights" class at Eden Prairie High School about my battle with Cystic Fibrosis. This is a unique classroom environment because it is a mix of students with different physical and mental challenges - down syndrome, cerebral palsy, etc - and their "peer partners", who are your typical high school students. During our time together I give them information on CF, let them try on my therapy machine which makes them them giggle as their voices vibrate, and show them the medicine I take on daily basis. The best part of the presentation for me is when I open the floor to questions. This amazing group has always engaged in discussions and this year was no different. We talked about death, marriage, college, my high school experiences. You name it, they had a question. No subject is off the table because what these kids need honesty and vulnerability.

My goal has always been to motivate others who have struggled like I have. The only reason I feel semi-qualified to speak to them is because I've walked a similar path. I remember how hard it was to make others look beyond the label of "that kid who has..." and get to know the real me. But there are some differences as well. My disease has very minimal outward signs and symptoms, so I have the initial opportunity to cultivate friendships before letting them know everything about me. I can't imagine how hard it must be for them to find true friendship without dealing with immediate judgment and ignorance. They persevere valiantly, only wanting equal treatment from their peers. For the most part they are given it; It's just a small percentage of the population that are insecure and vile enough to leave a permanent scar on these wonderful people. A few years ago, a young lady in the class asked me how to cope with people teasing her about her disability. When I suggested a few options she replied "What if that doesn't work?" I had no answer for her and it broke my heart. Why are people deliberately mean? Why is it so much easier to fear and hate what we don't understand? Don't they realize that it hurts to be laughed at, ridiculed, or patronized for things you cannot control? Thank goodness for their "peer partners" in the classroom. They are a true friends because they interact with their classmates with respect and honor, the way we all deserve to be.

Before the bell rang, I left these students with a final thought: "We all have our crosses to bear. Some just aren't as visible to the naked eye. Whatever your cross is, you can get through it. No one can control what happens to us, but we can control how we react to it. Every student in this classroom has the ability to be the best person they can be. All you have to do is try."

After the classroom cleared their teacher complemented me on my honesty and my ability to connect with her students. She told me they had never been that engaged in a discussion with any other guest speaker. The fact that I empowered her students really meant a lot to me. If listening to me and seeing what I have been able to do will give someone the confidence to achieve even greater things, then I am happy to do it. What those students and teachers don't realize is that they inspire me to be a better person. It's a blessing every time I get to walk into that classroom. My dream is to one day become a motivational speaker and go around the country promoting self-confidence and self-worth; becoming an advocate for anyone who battles bravely through their life challenges. With any luck, I will find a way to do that and continue giving back to students just like these kindred spirits.

Peaceful Things,


Saturday, May 16, 2009

A Baseball Birthday in Boston

As we headed for the the ballpark adorned in Twins gear from head to toe, I was so giddy! A few days earlier, I found out that I was going to Boston for my 30th birthday with my wife and our closest friends! With a big grin permanently stuck on my face, we stepped on the Green Line of the "T" Train - Boston's transit system. I felt like the four of us were in a baseball-themed version of "Where's Waldo". Can you find the Twins fans in a sea of Red Sox rubes? I was a little intimidated after I asked Carly what stop was for Fenway Park. The entire car full of the "Red Sox Nation" answered "Kenmore!" in a thick New England accent. I probably could have figured it out by following the people with B's on their hats, but the funny thing about that...the percentage of people in Boston with some form of Red Sox attire is far greater than the portion without. I may have ended up on the other side of town if I chose the wrong person to follow. Don't mock me just because I am directionally inept.

The feeling of intimidation slowly disappeared as the days progressed. Everyone we talked to was "wicked" awesome. There was a couple who were excited that we made the trek to Boston even though they warned me that "the Sox are gonna light your ass up". Another Bostonian told me he hates every team the Red Sox play, but hates us less because we "bleed simila' colors". The best conversation by far was outside of the bathroom (or the "pissa" as I was told to call it). This guy was a stat machine and started naming off Twins who played for the Red Sox and whether they were any good. Eventually he got to Tom Brunansky, who was a member of the Twins 1987 Championship squad and, I am proud to say, a good friend of mine. I name-dropped Bruno and this guys eyes lit up. He said he loved Bruno and told me about how he got the Red Sox into the playoffs with a diving catch in 1990. I looked it up on good ol' Wikipedia and there it was! Even when I was holding a hand-crafted sign that read "Circle Us Bert, It's My Birthday" that Kari made for me (a special surprise), I received nothing but well-wishes and a little bit of ribbing which I gladly took in stride.

Boston fans are hardcore fans that live and die with their team. I would call them intense but friendly. You can feel their energy within its confines of Fenway Park. Murals cover the walls and retired numbers are shown throughout the entire stadium. It's a dying breed in a sports world filled with stadiums named after corporations. When the first game was delayed due to rain, the fans didn't leave. They simply headed for the concourse and drier ground...and Fenway Franks, Sam Adams Beer, and anything else they could consume while they waited anxiously for their heroes to return to the field. Fenway had turned into a giant pub. They stayed until the last minute when the game was officially called off and the two teams would meet in a double-header the next day. Even though the Twins were pummeled both games by the Bo-Sox, who decided to hit a few homers to feed the "Green Monster" - the affectionate nickname for the vertically extended wall in left field, we had a great time in a classic stadium. It made me excited for outdoor baseball next year in Minnesota. Not in April though...brrrrrrr.

During this trip I realized my body is a little weary. While Carly, Kari, and Chad all strolled along at a steady pace, I struggled to keep up. My lungs were aching because I didn't want to go back and do a therapy in the middle of the day. My leg was numb from all the walking we did which was excellent for me, but really pushed me to my physical limits. I was truly grateful that as we saw the sights of Boston - The North End "Italian District", USS Constitution, Boston Duck Tours - no one mentioned how slow I was. They would wait for a moment never making a big deal about "Ol' Slowpoke Josh". The trip was fantastic and I am not complaining one bit, but I wish I felt as good 30 as I did at 20...or even 25.

I cried a little as I stayed up to do a chest therapy the eve of my birthday. Never in my wildest dreams did I imagined watching a double-header in Boston with three people I loved. You see, I used to loathe my birthdays. They seemed like a countdown to me rather than a celebration. While everyone else seem to revel in accruing another year, I became depressed because I was running out of time. It's only recently that I've understood the purpose of them. It's one day out of the year that everyone should have the opportunity to feel important. I definitely felt that way all week. Thirty years of a life that I was not supposed to have were being celebrated and I took it all in.

Thanks to my family and friends who all kept a secret and were a part of the several birthday celebrations which made my 30th birthday wonderful. Each one was amazing. Thank you for loving me so much. I promise to make the next thirty years the best they possibly can be. In closing, here is a video I created of my visit to Fenway Park. Sing along if you'd like...

Peaceful Things,


Sunday, May 10, 2009

Mother's Day Tributes

A special moment for my mother, grandmother, and all mothers in my life...

My mother sacrificed everything for her children. Some people say it, but she actually did it. She gave up everything else to take care of us. She had her sights set on the storybook life - 2.3 kids, white picket fence, a career, and so forth. Then she had Angela. When a mother is pregnant the only thing she really wants is a healthy baby. My mother didn't get that. What she got was a precious little angel whose body didn't work, but it made no difference. It was just a little extra to deal with. Love knows no limitations.

After Angela was born my parents decided one child was enough. As I've said before, life is what happens when you're making other plans. In this instance, I was "life". Unfortunately, I was very sick as well. In fact, the doctors told my parents that they should prepare for the worst, but my mother said she knew I would be fine. Several surgeries and a few pounds later, I was at home and thriving.

From that moment on her children were her career. I am not just talking about the physical care. That was a large part of it and I will get into that a different time. What I am talking about right now are the fundamentals of being a parent. My mother has been the one constant in my life. She is encouraging, loving, silly, eccentric, generous, funny, strong, strict, demanding of my best effort and passionate about what she believes. She's stood by my side in the toughest times of my life. You would think that would be a given for all parents, but I have heard stories and know people who never had the love of their parents and are still struggling for their approval. Perhaps the greatest gift my mother ever gave me was the knowledge that I would always have her love. I have apologized profusely for thirty years for being sick and forever changing the course of her life, and she has begged me to stop feeling that way. My mother always reminds me that she wouldn't change a thing. Her daughter and son are her greatest achievements in her life. She loved her Angela unconditionally for sixteen years on this earth and the sixteen years and counting she has been gone. She will continue to love me forever. She says I made her a better person. So, for Mother's Day I am making the public promise to never again apologize for being sick. I guess, in a strange way, it was my honor. You are an amazing person with a wonderful soul. I couldn't ask for anything more in a parent. These words do not do you justice. I love and adore you. Thank God you were here to love me.

My grandmother has different personality than my mother, but has the same core elements that make up a wonderful parent. More often than not, she is quiet and shy. She would prefer to absorb all that is around her rather than being the center of attention. I think that comes from being the mother of twelve boys. No girls...just boys. There was no time to worry about herself. One would think that a person would not have enough energy or love for that many children. Think again. Not only did she pull off this amazing feat of motherhood, but as her family grew so did her love. She has enough of it for any and all who cross her path. Some of the greatest moments of my life will revolve around simple conversations with the matriarch of my family. Those conversations are a large part of the foundation for who I am as a man. Thank you Grandma, you are my favorite. I know you are my only one still with me, but you are still my favorite.

I am a self-diagnosed "Mama's Boy" and proud of it. Without mothers there would be no night time tuck ins, no extra desserts, no groundings, and no reading on laps. There would be no shoulders to cry on, no one to drive us to our friends' houses, no one to borrow the car from, no one to call us just to check in, and no one to fight with when we are young enough to think we know it all. As we got older and smarter, there would be no one to come home to for the weekend from college with a full fridge and dinner on the table. No one to send us out the door with our laundry all done when we "forgot" to do it. No one to watch us graduate and no one to brag about us when we finally do. No one to watch us fall in and out of love. No one to sob as we get married. No one to struggle as we "leave the nest". No one to watch us from a far and always keep us near. No one to teach us what love really is.

Motherhood is the greatest profession of them all. Here is an interesting article about the salary a mother should be paid for all her responsibilities. Not enough in my opinion.

Today I give thanks to all of the mothers and mothers-to-be. You are all beautiful and I love each and every one of you. By the way, if you are a mother of pets , that counts too. People may think you are crazy, but it doesn't matter. You give your heart just as much to your "furry kids". Trust me...I get it. ;-)

Peaceful Things,


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Peaceful Things ~ Josh
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