Unrelenting Home

When I was eighteen years old I left home. Geographically, home is a smattering of small lake towns in Southeastern Wisconsin. I went to Wilmot High School and grew up skiing at Wilmot Mountain. Just like my Dad. As many young men I felt I had to go to find something. I went west to the mountains. I found my niche in the backcountry skiing world. I built a life, and when my wife Christine decided to leave that same hometown in Wisconsin to join me, we built a family. Amos is the light of our lives. He is a gift. Every day that we have with him from now on is like a second chance. Ever since I left Wisconsin I've had bouts of homesickness. I have been fortunate to land a night job with the airlines that affords us the ability to come home often. I am blessed for it. When I would come home often I would see old friends who would praise me for "getting out of here". At first I agreed, but as time and experience came to pass I began to see the qualities of these small towns beyond the geographic. I have traveled the world far and wide in my ski pursuits, and as I met many wonderful people in so many beautiful places I realized that the things that make our hometown great are far less tangible. It is less obvious then some prolific mountain range or famous sight for clamoring tourists. In no mixed words…  it is love. Love of the people who knew you before you knew anything.   

Christine and I's family put on a benefit for Amos at the Lily Lake Resort just blocks from where I grew up on the lake of the resort's namesake. Now that I am an older an wiser man I see this little lake community and the local tavern for what they are. Nothing more then the perfect place for a young boy to grow up. I know most folks of the world know that it sounds strange to talk about spending a childhood in a tavern, but this is Wisconsin. We don't expect you to understand. I used to buy candy from the bar, eat lunch during a day at the beach, and when I was old enough I learned to party there. On the day of the benefit I was able to pick up my Grandpa Don pictured above. He is the last grandparent I have on this planet. By the miracle of technology he was able to FaceTime with Amos and Christine as we drove to the resort. It broke my heart to see his teary eyes as he looked into my son's eyes on my iPhone and spoke to him like he was there. Living away from home affords me the perspective to take so much pause and solace in little moments like that. I was very emotional, and it was just the beginning of the day as we pulled into the small beach resort.

^So many volunteers like these fellas gave so much effort to pull off this amazing event. The Lagerwalls and Regniers go way back with both Christine and I's families. Our grandparents were friends. These boys and I all came up in this place. All of them have become great men as a result of the same kind of upbringing as me. You can't thank people enough for this kind of outpouring of love, and for these few guys that also include hundreds of gallons of beer as well.

^My big brother, Tyler, and his wife, Nicole, were the Chairmen of this event. I would have included a picture of her as well, but I think she would rather I did not because she was unbearably pregnant this day. So much so that two days after the event she went into labor. This crew was slaving over a hot grill all day to feed the nearly 800 people who came out to show us they love us. Nothing goes better over a hot grill, then cold beer and bright smiles.

^Lady Vols!

^Marc and Shelley Weise. Shelley is my cousin, and she is a recent breast cancer survivor. She and her husband Marc have been solid confidants to me throughout this ordeal with Amos. It is hard to explain this roller coaster to people sometimes, but anyone who has been in the midst of it knows the ups, downs, and curves of the ride. I will never be able to tell Marc how much his words have meant to me. In one of our conversations we talked about a toast over a cold draft some day. At one point near the end of the event Marc came up and gave me that proper cheers. I had not remembered it until that moment, but when he held up his glass to me it came back like a flood off the quant beach. I was so thankful for it. Shelley and Marc have had to relive their own sorrows to a certain degree as a result of Amos' situation and consoling me, and I will be forever grateful to them.

^These people who came out are all a part of me. They helped raise me. The Mathers, Ron and Laura, pictured above were a large part of that along with this whole town. It warmed my heart to hug as many of these people as I could. 

^Adam Mather is the oldest friend I have. He and I first met before we even knew better. Our parents were next door neighbors and friends, our father's worked together, and our older brothers were best buds before Adam and I were even born. Of course, we would become the kind of friends that as I traveled this world I learned that not many people are blessed with. It was the first time I'd seen him since Amos got sick. I fell apart in his embrace. That is part of the intangibles of small towns that I was talking about. The kind of love of a friend you have known and loved before you even knew why. Adam is one of a group of boys who I grew up with in Lily Lake I call the "starting five". The other guys came out to see me recently in Utah, and now I finally got my arms around Adam too. I am so thankful I could. His big brother, Graham, and his wife, Kathleen, drove 27 hours from Arizona to be there for us.. That is family kind of stuff. My brother, Tyler coined a phrase once, "Families of friends, and friends like family."

^Christine too is blessed to have friends like that. These girls are the best kind of friends that any woman could ask for. I also have been fortunate to call them friends as well, but seeing them come through time and time again for my wife has given me so much gratitude. I can never really say what it does to my heart to be witness to it, to them, and to the mothers they have all come to be. 

^Mom, brother, and Dad around me. The story of my life.

^Our old friends Dan and Kelli Fox donning their Bears attire are among all the old friends of ours that came out. Dan said it was like a high school reunion, and he was right. So many of Christine and I's friends from our lives came. It was nothing short of one of the most miraculous things I have ever been witness to.

^I gave a short speech. I barley held it together to try to convey how much it all meant to me and Christine. I talked about a road map. How cancer does not come furnished with one, how the people of our lives have become the map that has given us direction when we felt lost, and how any good map always brings you home.

^These people. They are the ones. They are the intangible gifts of a small town. They are the guiding light in dark times. I spoke to a lot of people that day, and throughout all the conversations I realized that this is our home, these are our people, and this is the kind of thing we do for each other around these parts.

^As day turned to night and the sun went down on a day I can only describe as the unrelenting love of home I fell to pieces in my big brothers arms. I cried in his shoulder for a lot of reasons, for my sick son, for our lives together, for everything he has been to me, for the family he was just about to start, and for simply flat out, everything. In that moment I could not put labels on the flood of emotions, all I knew is that my big brother had a hold of me solidly and I didn't have to be so tough for just a moment. 

^In this post I talk about the intangibles of this place that I had to leave to gain the perspective to see. I have felt it for years now as I aged and traveled, but this particular day on the shores of Lily Lake brought it all so deeply into my heart. As I said in the closing of my speech that day, "… I realized that indeed we did have a road map. This road is not guided by left and right turns or treatment plans, but by all the people who love us. And like any good road map it will always lead you home to the kind of place where hundreds of people will gather on a Sunday to tell us that they love us, we are not lost, and we never were because all of you have been with us on this road the entire way. So thank you. There really is no place like home."

Round Two and Transplant Route

Our time at home was so special. It felt like a gift. I was having a hard time leaving him to go to work every night because it felt like I was missing an important time with him. Due to the severity of his illness I can't shake the feelings that I need to be with him as much as I can now in case I don't get to someday. I know I have to stay positive for him, but those fearful doubts have a way of working their way into my head sometimes. Just before we were set to check back into the hospital to begin round two of chemotherapy Amos had some testing done to determine whether or not he will require a bone marrow transplant. To our dismay the tests showed that he would indeed have to receive a transplant. For those of you who desire the medical details, Amos' blood showed that he retained 2.6% Leukemia cells, which is still too high for an intermediate risk treatment plan of straight chemotherapy. So now we have to go the route of a high risk plan, and a bone marrow transplant. He will receive this round of chemotherapy while the doctors here dig into the bone marrow registry to set up a compatible donor and get everything in line to be ready for him when the time comes.

^On Friday morning Amos suited up in Samurai warrior gear complete with swords and ready to kick some cancer ass with a smile on his face. We packed up our suitcases and a pile of toys to check in for another month-long treatment. We felt like cagey old veterans coming back into the hospital. When we checked in I spotted a weary dad with tears in his eyes and a haphazardly loosened neck tie like he just ran out from behind his desk to get to the hospital. I saw him again the following morning still donning the same business formal attire and beaten down look on his face. I knew his pain. I wanted to give him a hug, but it seems most of the families around the cancer unit kind of keep to themselves. I have chatted with a few parents in here, but it seems most just want to keep it casual. I have pondered on this observation. The only conclusion I can come to is that we are all in a life and death struggle with our children and each of us have gotten the statistics that say that some where around one in four of these kids are not going to survive their fight. The only thing I can think of is that each of us knows this and in a sense we refrain from getting friendly with each other because as the numbers go not all of us are going to get the outcome we want with everything in us. It is not that we are rooting against each others kids in the unit, but we are all rooting for our own kids. However, if one kid survives then conversely that kind of means that one of the others will not. It really is a day to day thing for each of the many families in the unit. 

^Amos is a happy boy still though, and that is all we can focus on. We try to get as many smiles and giggles out of him as we can, and we put each one in our pocket like it is the real currency of life. As our doctors explained the next route of treatment with the bone marrow transplant I waited to ask the question, "What happens if the transplant doesn't work?" The doctor answered as softly as she could that if the transplant fails there will not much else left to do. Christine and I had a real moment of pause at that point and contemplated that outcome for only a moment before we both snapped ourselves back into the present time and place of a happy smiling boy who needs us. The thought of "nothing else we can do" has been a hard outcome to consider. We simply default back to positivity, our day to day tasks of caring for him, and getting as many smiles out of him as we can. It lingers in the back of my mind, but I am quick to get the horse back in front of the cart to stay in the moment. Too much big picture thinking can tear one up inside. It is a constant battle to stay present and positive. I have always been one to try to live that way, but it is a conscious effort each day.  

^Watching Amos wheel his baby walker toy over to the sink and go to town on the plumbing fixtures was one of those smiley moments that feels like gold. I promptly sent his Uncle Tyler, a plumber, some video of Amos going bonkers over the hot and cold valves and the P-trap. Tyler thought that was hilarious. So did Amos, and me too. Maybe Amos can take over my rental properties someday after all. Seems he is taking to the work quite happily. Of course, when you pull about six months worth of your tenants hair and soap scum out of a clogged P-trap that enjoyment can turn to gagging rather quickly. I think he will be one tough character that won't be phased by a whole lot in life after this. 

^Play hard, sleep hard. Like I've said before, if you didn't know better right now he seems like a regular kid who loves to play with his toys and his momma. His crib turns into a smorgasbord of Ninja Turtles, blocks, balls, rattles, and toys of all shapes and sizes. We have to keep the selection fresh for him until eventually he plays himself all out and the next thing you know he is passed out amidst a pile of toys. He is just too damn cute. Sometimes I can barely handle it. This scene just cracks me up.

^The nice thing about the location of Primary Children's Hospital is that it is nestled right up against the foothills in Salt Lake City. Christine and I trade off shifts to get a chance to get in some exercise in the hills. The elevation helps gain perspective and some endorphins to keep the body, mind, and soul all going strong for him. Sunset is a special time to me, and getting to watch one from time to time in the hills is food for my soul. The hospital and the fight can wear on me. Getting outside and up high always comes to my rescue.  

^The mountains and nature have always been a refuge for me. The mountains have always been there for me when I need it the most. I have found purpose, love, and myself in the mountains. However, they have recently showed me that it was not them that did this for me. They simply served as the catalyst that allowed me the ability to channel the spirituality I always had within me. They were the conduit that allowed me to open up to what was always there. These lonely flowers made me think of Christine and I growing together in the sea of grass that is this human existence we stumble through. I have always felt like I was on a journey searching for answers, but now this whole ordeal has served to show me that there are none. There are only more questions. To expect to find absolute answers is futile. Religion calls it faith. I don't have a single word for it, but I feel it now. I have always been a natural leader. People have always looked to me in times when someone has to step forward. I almost always rose to the role. I have not always succeeded, but I always tried my best. Now in this situation there is no where to look for an answer or a solution. Christine and I are helpless to do anything to fix Amos. All we can do is love him everyday that we have him, and maybe that actually is the answer. It is not the one we all want to hear, or the one I want that can fix him. However, it may be the only answer we have to anything in this human existence. I have been the one that is looked to amidst what I call the fog of chaos. The fog of chaos is when life and death are hitting the fan. The most intense situations life has. Often in these situations people look to someone to tell them what to do. For some reason I have always been that person that everyone is looking at when the fog rolls in. I have made both right and wrong calls in the fog, and those moments will haunt my dreams forever. Not many people will know what it is like in the fog of chaos. Soldiers of war talk about it, and it seems some people who have led lives similar to mine can speak about it as well. Otherwise I can't really explain it, or why I seem to be able to step forward when it takes over, but I do. However, now there is nothing I can do. It eats me up too. I want to do this for him and there is nothing I can do. I have rarely been powerless in my life. However, here I stand powerless and helpless to fix this for the two people I have sworn my own life for. I would trade places with him tomorrow, but that is just not something I am able to do. There is no answer. No right one, and no wrong one. There is only what will be, despite anything I wish I could try to do. So while there are no answers or actions I can take to fix him I will simply look inside myself, to my wife, to my family, to my friends, and most of all to Amos to give and receive as much love as my heart can handle. It is all I can do, and it might just be the only real answer to anything. Love.