A Proper Birthday Party

My wife, Christine, and I bustled about the house tying up all the last loose ends before people were to be starting to show up in our backyard. This was our first proper birthday party we were throwing for Amos. His first two birthdays were fraught with cancer fight obstructions. One actually in his hospital bed. The other just shortly after he came home in remission, which with the timing of it he could not yet really interact with many people and kids per doctor's orders at that time in his recovery. However, today our little warrior turned three years old, and we finally got to throw him a proper birthday party in the backyard with as many friends that we still managed some contact with after basically two years in social darkness with his battles. I whispered a lot of promises in his little ears as he lay motionless in the ICU at Primary Children's just barely holding on during his worst moments. Now as Christine and I nervously prepared for our guests I recalled all those promises about my own efforts for his young life, and all the people I promised him he'd meet. Many of those folks were going to be showing up, and many of those same folks were a huge part of our support here in Utah when he was fighting his battles. 

^Toys out for the kids. Munchies on the tables. Drinks chilling on ice in coolers. Balloons blown up and hung. Pizza for all the guests. The list was larger then each of us realized it would be in our first endeavor into a backyard birthday bonanza toddler style, but we checked tasks off with intent for our little boy. We both just wanted everything to be perfect for him. We often find ourselves trying to go over and above for him because of the suffering he endured and our tendencies to want to try and make up for it all with him. He has no idea he has had a rough go of life thus far for such a young boy, but we do. We often find ourselves setting unrealistic expectations on ourselves to give him a good life worthy of his will to live. It is a parent guilt burden we will have to live with forever even though he only knows that the large scar across his belly is, as we taught him to say, "from when I was sick, but I am better now". The second part of that phrase which we made sure to teach him is kind of like if we make him say that, then it will manifest itself to remain true as long as he keeps saying it. We both also know that if that does in fact remain true that we too cannot hold onto that parent guilt that drives our need to over produce a life for him that is worthy of the amazing sacrifices and pain he endured to survive. We know that over time we will have to treat him just like any other little boy, but this day he is his first real birthday party we can throw for him just like many little boys get to have every year. So for us that is still a really big deal worthy of all our nervous running about with last minute preparations.   

^Once we settled into the evening we began to enjoy watching him play with our friend's kids enjoying all the bells and whistles of a birthday party just like any other three year old boy. We were able to relax, and take it all in. The smile on the his face racing around with the other kids. The giggles in their tiny voices as water balloons and water gun squirts shot across the backyard playground scene. The nervous look on Amos' face as everyone sang "happy birthday" to him. It all became so precious as the  party milestone moments unfolded. 

^Blow'em out buddy!

^Eat as much cake as you can handle little man, you deserve all of it and so much more! We will keep doing our best to make sure you have every chance at the kind of childhood any little boy should have.

^I can't speak enough about how grateful we are to be able to have had this party for him. I can't speak enough about the people who came to celebrate with us, and the support all of them were to us when we were in our darkest hours of the cancer fight. We joked with our friends that this party was our first emergence out from social darkness, and that we really wanted make a point to see them all more in the future. It seems the more we can return to a life that resembles something normal the less and less we will have to feel like we have to go above and beyond for him so he can continue to live just like a regular boy enjoying a standard proper birthday party.

Happy Firsts

Our little samurai miracle boy, Amos, has been on the victory tour for some time now. He is off all medication, cleared back into society, a brand new burgeoning immune system, the go ahead from the doctors to play with other kids, and pretty much all-around regular kid status now. As such we have started to get back to the business of life that all kids get to experience. Amos is still clumsy for his age, but beyond the myriad of bumps and bruises on his head he is coming along to the speed of life rather well. With a new found freedom we have with him again we have started what we have come to realize is the slow process of integrating him back into the world. We have begun to be able to experience what I am calling the "happy firsts" that most kids get to experience a bit earlier in life. The saying "better late then never" applies here for us to the tenth degree. Over the last month or so we have taken him to a hotel water park for his first over night stay in a hotel and first water park, his first camping trip, and his first road trip.   

^Swimming with his momma was all smiles, giggles, and amazement for Amos. In the picture above his little mind was blown by the "big kids" coming down the huge water slide that he was yet too small for. He wasn't too disappointed that he was too small to ride it because he was pumped enough to ride the small water slide.

^In this picture Amos is getting his mojo up to ride the slide as he points at it and tells his momma in all kinds of gibberish about how he wants to ride it. I would guess. The gibberish, although plenty enthusiastic, was pretty hard to decipher. Needless to say it did not take any coercion to convince him to go for it. Despite his clumsiness he has no real problem with risk. I guess that is mostly my genetic gift to him. Clumsy and bold… tough combination for the little guy, which also explains the bruised and battered head.

^Full water slide face shot and the boy was super stoked! As I employ in my career as a professional backcountry skier we have been using an idea I call the "ramp up approach". In avalanche terrain I like to start a mission on the smaller and less exposed slopes in any given zone and then work my way up to the bigger lines. Therefore, in doing things the way I am used to we decided to take a "ramp up approach" to reintegrating Amos to regular life. This trip to the hotel water park was just a one night stay, in a nice hotel room, just an hour from our house. This "happy first" went really well, and thus gave us the confidence to step up to the next challenge… camping.

^There is a great little campsite near our house that is very lonely and relatively secluded while still being close enough to home that any impromptu exit we may have required would be relatively easy. The spot is just in the shadows of Snowbasin, but requires a 1-mile mountain bike ride to access. I loaded up an old baby trailer turned mountain bike utility gear trailer with all the camping gear we'd need for one night out. All the while Amos played at the Snowbasin playground with his momma and grandma. After I got everything loaded and secured there was one last ride down the tube slide for Amos, and then we shoved off for the short pedal out to the campsite. 

^The ride is beautiful and Grandma Kay managed the pedal push with grace, while Christine hammered down hard on the heavily packed down utility trailer. Of course, being our first camp out with Amos I opted to bring way more gear then we really needed and Christine had to drag out the load of my decisions. Needless to say, we have decided to pare down the gear selection for next time. I was proud of her none the less.

^Pictured above we are at the campsite having some dinner with the whole clan in tow. Even Murph dog joined the camping party. The evening went really smoothly. Amos was so pumped to be camping out. He wanted to check out everything. I can't adequately express how happy I was to see it.

^As I broke down the camp kitchen, tidied up the site, and extinguished the fire I couldn't help but laugh at the sound of the operation going on inside our tent. Christine was trying to get Amos ready for sleeping in his new sleeping bag and all I could hear from him was incessant giggling. By the end of her pleadings the both of them were busting out in a full-on giggle attack that had them both rolling around inside the tent in stitches. Amos was having so much fun that he could not calm himself down. I  figured eventually he'd wear himself out enough to finally pass out. He did. However, it didn't happen until about 1:00am, and he only slept until 4:30am. He was so excited that he simply could not bring himself to sleep. I did not sleep a wink as a result, but I was too pleased that he was having fun not to just roll with it. Still dark at that hour of the morning and Amos and I were hiking around the trails near the campsite while Christine and Grandma Kay tried to manage a little bit of sleep. Murphy didn't sleep a wink either and sat on guard outside the two tents as the women of the family caught just a few z's. My saying for the night became a rather sarcastically toned, "I am so happy you are having so much fun Amos. Maybe you'd like to sleep a little now?".

^Obviously by the time I snapped this pick of our little mountain man in the morning he was gassed. He could barely keep his eyes open on the pedal out of the area. By the time I steered the car out of the Snowbasin parking lot he was sound asleep in his car seat. Despite the lack of sleep for all of us I still am chalking up the first camping trip as a complete success. We will do a few things a little differently next time, but that is why we chose to ramp up his "happy firsts" accordingly. 

^With successful hotel and camping over nighters under our belts we decided it would be a good time to ramp up to the next level to embark on Amos' first road trip. Moab, Utah is one of Christine's favorite places on earth and she was itching to get down there. We planned out a quick three-day adventure in the desert paradise, saddled up our Jeep with way too much gear, strapped Amos in his car seat with plenty of snacks, and hit the road. Amos loves car rides, and as such, he was totally stoked for his first road trip. "There is a truck mom!" he would holler as we'd pass a semi-truck. A five-hour car ordeal and he maintained good spirits all the way. 

^Christine and I would sneak out for a quick mountain bike ride while Amos and Grandma Kay would catch a nap each day. In the picture above Christine pedals through slick rock on the Circle O trail in the M.O.A.B. Brand Trails. That is one of the beauties of Moab. All kinds of things to do for the whole family, and close enough proximity of all of it to bust out a quick ride during nap time.

^Me and Amos walking to breakfast.

^I am pictured here doing a few laps driving around Arches National Park while...

^…Amos snuck in a short mid-morning nap. 

^I don't typically drive him around for a nap, but when he pops one on ya and the views are this good, why not? He was a little all over the map this particular afternoon with his temperament, and I must say of all the "happy firsts" we have been introducing him too this one particular morning was the only time he really was not on his game. His schedule was a bit off, and the impromptu mid-morning nap kind of had his rhythm all messed up.

^ Despite his attitude we geared him up into his back pack, and I saddled him up the trail. It took him a while to get his head right, but on the backside of the trail loop we let him out of the pack to walk it. A few rock jumps and one little tiny climb had him back in action. He was fired up, and going for it. Hand in hand with his momma he was not afraid to take on any red rock obstacle.

^Also, when Amos is all smiles, we are too. Christine and her mother, Kay, posed for a cheeky picture in front of one of Arches National Park's iconic red rock arches. 

^Just after this picture above is right about where he turned the corner to happy town again on the backside of the South Window Arch. He was kind of tired and crabby, and I had to give him the speech about breathing it out once again, but I was also quick to commend him for the adjustment once he finally did come around again. 

^In this picture above me and Amos are in the North Window Arch. I still get goosebumps every time I load him up into that backpack and carry him up into the trails. In the heat of his cancer fight that backpack was my light at the end of the tunnel to focus on. I had all kinds of ideas about where I would carry him in that thing before he got sick and when he was fighting for his life all of those plans faded away. I mourned for the life I had envisioned for him then because at that point all I wanted was for him just to live. If he could just fight for that, then I would find a way to make it all up to him some day. I promised him I would. When he was under comatose sedation I used to whisper in his tiny little ear about all the things we would do and the people I would take him to meet. Now before we knew it the Moab road trip was over. We had delivered on a few of those promises I made to him in that ICU hospital room. He was so happy about all of it too. We were so happy that he was. Lord only knows what his life has in store for him, and these days we try not to worry too much about the distant future so much. Largely because we know now more then ever that tomorrow is never a guarantee. Another big drive back home to Ogden, and soon enough we were back to the daily schedule again. As I burned yard waste in the backyard while Amos, Murphy, and Christine played in the grass I gave some thanks to the universe for the "happy firsts". Mesmerized by the warm flames and my grateful heart still simmering with the memories of the adventures we'd been taking him on I simply let out a long slow sigh of relief and started dreaming about the next level in the approach to keep ramping up the experiences. Over the whole two-year cancer fight I have made him a lot of promises. I intend on delivering on all of them, but for now I will just worry about building on our momentum and planning for the next "happy first" adventure, one day at a time.

Spread a Little Love Around Wisconsin

My wife and I were born and raised in Wisconsin. We are among the only people in our families that have left the area we grew up in. Our ties to our hometown are prevalent and strong. Despite having lived in Utah for a rather long time by now we still consider ourselves "Sconnies". As such, our little boy is a "Wisco Kid" all the way as far as we are concerned. Our whole family is there, we had our wedding there, and we plan to grow old together there. I am very much a man of the world by now, but a cluster of small towns in rural southeast Wisconsin will always be our home. My wife, Christine, had received the news that she was going to have some business to attend to in Chicago. So it made perfect sense to schedule some time to visit family as well around the business obligation. With Amos' current clean bill of health he has been cleared to travel so of course he was going too. 

^Christine and Amos left on a Saturday. I had to work my shifts at Delta Airlines so I would not join them until the following Monday. I smash 32 hours into two days so I would not have the time to miss them all too much anyhow. 

^Equipped with plenty of episodes of Thomas and Friends, his favorite juice, and a bundle of snacks, and, according to Christine, Amos was a perfect little gentleman on the airplane. Christine and Amos landed in Appleton, Wisconsin for starters to spend some time with some of Christine's family on the Johnson side of her clan. Great Grandma, Auntie Di, and Uncle Gary to name a few, but Amos got to see some of the Johnson cousins and others up there as well. After a couple days they headed back down south to our hometown area. 

photo credit: Aunt Marsha

^My mother, Amos' Nonni, of course can not get enough snuggle time with her little buddy. Amos gobbles it all up too. His Nonni and "Backa", as Amos has come to call my Dad, are among his favorite people. He is always talking about when his Nonni and Backa are coming to visit, or when he gets to go to their house. 

^On the tractor with Backa.

^Ripping around the little car Nonni got for him.

^Some action on the slide at the neighbor's house. Amos always has so much fun with his Nonni and Backa. Of course, fun would not even begin to explain the experience from my Mom and Dad's perspective. I have never really seen either of them as happy as they are when they are with their grandkids. It seems that maybe the only reason they had kids was for grandkids! Over at Nonni and Backa's house Amos also got to visit with many of the other Robinson clan that came over to see him like my Uncle Ajax and Aunt Marsha, as well as my Aunt Inky (nicknames are commonplace in the Robinson clan, we all have 'em and most of us go by them daily… J.T. is not my full name).  

^Of course, the fun doesn't stop with Nonni and Backa and the Robinson clan. Amos gets around quite a bit any time we can get him home to visit family. Spending a whole day paling around town with his Uncle AJ, and riding the four-wheeler with Papa Phil suits Amos just fine. Amos loves cars, trucks, trains, and basically any transportation vehicle so Uncle AJ's garage is a veritable candy store for Amos.   

^New toys and playing in the garage makes Amos a happy boy. In this picture Christine and AJ's girlfriend, Jackie, laugh at his giggles as they blow bubbles at him from a new toy that he came home from Appleton with.

^Happy boy! Bubbles and snowmobiles, yeah, that is right in his wheelhouse!

^Amos and his Great Grandpa Don, GP, as we call him. I can't tell you how it breaks my heart to hear my Grandpa literally talk out loud to my deceased Grandma Rita about Amos as he looks to the sky holding back his tears. At one point he simply sat quietly hugging Amos with his eyes closed and his cheek pressed against Amos' head. I had a Boxer beer with GP and listened to one of his all-time stories about some sort of his latest gaffs. This one involving four or five local fire trucks, squad cars, and countless men looking for a natural gas leak had me busting at the seams. I once heard a great quote, "Getting old ain't for sissies", but my Grandpa does it with classic grace and humor. I hope I can have such a great attitude if I ever make it to his age. My Aunt Joanne and cousin Allissa came over with her daughter, and Amos and her were chasing each other around GP's house in no time. 

^My brother's son, Cole, and Amos are going to town on some apple sauce together in this picture. When Amos was sick I thought about these two playing together a lot. My big brother and I had always  envisioned our kids would be best friends, and when Amos was fighting cancer the fleeting nature of our dream for them was heartbreaking. I couldn't bare the thought that these two may never know each other. Now watching them play with each other and giggle is still like some kind of dream that I am not sure is real or not. Every time I pinch myself and don't wake up though is the greatest gift I ever hoped it would be during those dark times in a well-lit hospital. 

^A good-bye hug… yeah, I barley held it together on that one.

^Then a big hug for my big brother, Tyler, and my heart strings were playing a Ricky Skagg's bluegrass tune, "Spread a Little Love Around". Before Amos had gotten sick I had all kinds of dreams for his life. I had all kinds of ideas about where we would take him, things we would do, and many of those dreams involved my big brother, his wife, and their baby boy. When Amos got sick all of those dreams faded away for a while, and I literally mourned for the life I was unsure that he would ever get to see. Now that Amos is doing so well right now they are all starting to come back like memories of pieces of a dream that I can't quite recall. For a while I wanted to put all those dreams aside because of the uncertainty of their realization. However, every time I see something like this big hug a little bit of those dreams comes back. That whole world that I envisioned for him slowly drifts back with each hug, and each "Uncle Ty" or "Uncle AJ" uttered by his little tiny voice. Amos still has a very long road in his recovery, and his life for that matter, but as we have come to live more and more with a day-to-day attitude I am still reluctant to get too far ahead with dreams for his life. However, that is a little easier to overcome when the days are so good that they feel like those dreams actually coming true. If there is one blessing to come from his cancer battle, and there have actually been many, this hug, this trip, seeing him with these people… that is surely a blessing that my wife and I appreciate so much my words can never do it justice. So like Ricky Skaggs belts through a microphone, "we can change the whole world if we start in our hometown. So get out today, and spread a little love around."

Do Our Best, and Test the Rest

Our little warrior, Amos, has been over a year out since his bone marrow transplant and he is still very busy at the task at hand. Trying to be a regular kid. We are doing our best these days to make him feel like every other kid out there. He goes to his babysitter's house and plays with all the kids. He is learning to speak, count, and recognize colors. He is going to "Mommy & Me" swim lessons. He is going about all the things most kids do. As for the cancer, we simply keep testing. Amos is still subject to many tests and monitoring to make sure he is still on the right track towards being a regular healthy young boy. To this day I am still astounded at his strength, and all the support that continues to come our way. So many people still want to know how he is doing and what his life is all about now that he is doing so much better. I still try to keep this website relatively up-to-date to appease all the interest in his young life.

^Sadly, Amos is completely unfazed by these kinds of proceedings these days. The kind nurse was all ready to distract him before sticking him with a needle to draw blood, but Amos didn't even flinch or make a sound when she stuck him. I am proud that he is so tough, but a bit saddened by the same fact. He has just been poked and prodded so much that none of it even bothers him anymore.

^They can hook him up to whatever they want. He does not care one bit.

^Amos loves to play with my ski gear. While unpacking from a recent ski trip to Japan Amos decided to help me by putting on my gear and marching around the front yard hollering, "My ski poles!"

^No clothes necessary, but a good sturdy helmet is always a good idea. This kid bounces his big ole' head off of nearly everything in our house making for bumps, bruises and gashes all over his poor head. So if he wants to sport my helmet around for a while, then I will not object. It might save him one or two new dings on his head, and my ski helmet already has plenty. That cute little butt cracks me up every time though.

^That look in the picture above as if to say, "I am not a baby anymore Dad!" This fact is donning on me all too much these days. He is only two and a half years old by now, but he is turning into a little boy so quickly. He is definitely no longer a baby, and although his development was somewhat stunted by his cancer fight, he has been catching up on lost time rather quickly. His mom and I may call it the "lost year", but he has grown up regardless. Now as he begins to overcome his lacking motor skills and social insecurities we are so happy to watch him grow up. Every little thing still makes my wife and I freak out when he gets a cold or the flu, but we are also coming back around as well. Amos certainly is unfazed by any testing, social miscues, or development benchmark so we will do our best to do so as well. Today Amos is happy and healthy. So today, we are too. I still count my blessings for him and all the support he has received each and every time I give him a kiss goodnight or a hug in the morning. We are so blessed, each and every day.