September is for Sam
This photo depicting Purple Boy Sam ITP Aware is not what you would expect to see on my antique lure blog. But like I’ve said in the past #itsmystorytotell. This September marks 4 years of remission, and today is support purple day bringing awareness to ITP and other Platelet Disorders.
As a Dad I’m in awe of the strength and courage my son exudes and brings to the table daily, in his walk with this disease. Sam has had this disease for 8 years and never once have we or Sam let this disease have him. Doing the research when there were no answers to find, willing to travel far and wide to find the silver bullet, that never existed, but we tried, has been always been our mantra. The strength and burden he bore and met head on at 100% never wavering not knowing it fueled us as his parents, and in turn so many in some small way for him.
September is ITP Aware, and September is when our family made one of the hardest decisions we had been confronted with more than once. To take a chance, to surgically remove part of Sam in hopes it would keep at bay and neutralize his disease. Swapping the sometimes multi-weekly chemical cocktails, infusions, chemo and our many hundred mile round trips sometimes in the dead of night, for a life living on the edge in fear of something as simple as fever or un-vaccinated child.
Our minivan over the years seeming more like a rocket ship instead of a Honda, or a time capsule, that made the rest of life stand still. As the engine turned on and the lights shown the way, we clung to our own perseverance and faith as we did the headlights to guide us our way. Awaking and invading not only our own slumber, but those around us who have loved us, and loved Sam unconditionally. Whether to help watch our other son, a pet or with a long distant text or empathetic tear with thoughts and prayers, while the rest of the world slept.
September is not only special because of our decision for surgery, but is special because of Sam. I said earlier that it was during this month we made one of the hardest decisions we’ve made, and it was. September like Sam has always been full of surprises, and September is when Sam was born, Sam turns 11 today.
For those that have come to know Sam know life wasn’t going to make that easy for him either, and he was born 8 weeks too soon. Sam hasn’t ever had it easy, and life hasn’t ever picked easy for anything that has to do with Sam. 11 years ago this very time my wife and I lived in a Ronald McDonald house for weeks, hundreds of miles away from family and friends and our home. We refused to leave and come home and let him fight to live without us standing and fighting by his side. We put our life, family and jobs in check not knowing this would become a reoccurring theme for our family. Becoming adept at the unknown, becoming adept at adversity, becoming adept at ways to stay strong, and stand up to be strong for him, when all you want to do is crawl in a corner and let someone else take the wheel of life for a while.
As with #ITP, #plateletdisorders Sams story revolves around September, as those who love Sam revolve around him. Sams story makes a real hard case for the universe having a higher power or plan. Sam has ITP, was born a Preemie, has been hit by a car, knocked his front teeth out, has had a kidney hemorrhage, nuclear scans, spinal taps (plural), leaked spinal fluid on his brain, subjected to over 480 needles, infusions, chemo poisons, and flirted with Aseptic meningitis 104+ fevers and told many at those times, he has spoke with god.
And yet, you see Sam, that boy on that rock, who is a rock, still has a smile. Those that know Sam know that smile isn’t just for the camera, but for life and all gods creatures both great and small. Those that know Sam know that there is not only one rock in this photo, but two, as Sam from a Dads perspective, he walks with giants. Sams physical strength being far surpassed by his internal strength and his ability to meet and greet every day with a smile and determination, and to squeeze every last bit out of every single day. That aforementioned list isn’t a complete list of Sams trials and tribulations, if you would like to know those, ask him to show you his over twenty two foot strand of beads of courage, comprised of each 1/8″ beads, each a story unto themselves. I use the list to ask you to think for a moment, that if life wanted to, it’s had many chances to take him from us. I believe that there is a bigger plan for Sam.
Over 3 years ago we celebrated at Disney as a family his remission, and our family thinking that life might just settle down a minute and let us breathe. The week we returned my life my personal and physical life changed because someone decided to tie a pit bull to a front door handle of a home. Ending my career, and as of writing this awaiting another spine surgery. Recently as of 4 month ago diagnosed with a rare 4 in a million odds cancer.
But make no mistake even as I now have my own walk or cross to bear, this story is not about me, but Sam. I believe Sam was put here to teach me, his Dad, the one that is supposed to teach him. His story, his actions, his strength has given me something I continue to lean on learn from and be amazed by, him. He gives me strength, courage and hope without speaking a word. He recharges our batteries every day by his zest for life and his love for god and all his creatures both great and small.
Each one of you that have been in Sams life have been there at a time when he or we seemed to need it most. Being able refuel our own hopes and faith off yours when we needed it. For that I say thank you, and for that we tell him daily how he is loved and known both far and wide.
Some may think September sometimes stands for football, fall foliage, apples, school and the myriad of other things associated with this time of year. For me, I think September is for Sam…..Happy Birthday Sam from Mom & Dad and all those warriors who have walked with you and held your hand in person or in thought.