Sams Squad

Sam’s Story: And the Reason We Should Believe in Superheros

Sams Squad — Mon, 31 Oct 2011 21:49:06 +0000

If Sam’s story were simple, I would’ve written long before now. But it’s not simple; nor is it easy. It is, however, ultimately uplifting. So, dear reader, please indulge me. I’ll get there, though you may find it an uncomfortable ride.

Born January 20, 2002 with bilateral clubfeet and unable to breathe, swallow or digest, Sam arrived before he was ready. Immediately after his birth, Sam was placed on oxygen and rushed to the NICU where he was put on a ventilator. From outside the NICU, we could see two nurses working with Sam around the clock. We couldn’t tell what they were doing, just that they were always busy. We learned later they were giving Sam a battery of tests including MRIs, spinal taps, EEGs, blood tests, and a thousand other tests of an unknown nature. All in the hopes of trying to find out why Sam was so critically ill.

Sam’s initial examinations revealed characteristics similar to a preemie. His lungs were not well developed, his body fat was below the desired weight, he was not responsive, etc. After being examined by neonatologists, pediatric neurologists and geneticists, Sam was diagnosed with Congenital Myotonic Dystrophy, a devastating form of muscular dystrophy. It was hard news. There was no cure and at the time, no prospects of a cure. Three days later, Sam’s baptism was expedited after Kirk and Liz were told to prepare for a loss. There was little to do except to keep Sam “first in our prayers and first in our heart.”

Against all expectations, Sam showed some improvement and his doctors began to debate whether Sam could be removed from the ventilator. This was an important step. If Sam was ever going home, he had to come off the ventilator. After two more days of observation, Sam’s condition worsened and the doctors decided the risk was too high. And so we waited – for something, for the “fog to lift” and for the path to be revealed. While we waited, Sam worked. And the product of his quiet work was revealed when he began to digest food and to move. With Sam’s improved condition, his doctors decided it was time to remove Sam from the ventilator. We were hopeful, even optimistic.

Two days later, Sam’s lung collapsed and he was immediately rushed back to the ventilator. I sat in an empty NICU lobby that Saturday night waiting to talk to a weary, tired Kirk. Around midnight, Kirk came out and I volunteered to stay. Kirk shook his head and told me to go home. I understood Kirk could not leave Sam. As I walked out of Baylor Hospital and across Gaston Avenue to my car, it struck me that Kirk needed to be with Sam as much as Sam needed Kirk. Just the two of them. Father, son. I drove down Gaston, turned on Abrams and wondered what roads Kirk was traveling in his mind. Did Kirk believe Sam would live to see tomorrow? Did he believe he could give Sam the strength it would take to make it through the night? Was he like me when I had traveled the dark, empty roads of rural East Texas in search of my father on an equally long and lonely night in March of 1990? Was he as desperate as I was, hopeful one minute, fearful it might be too late in the next?

By the following morning, we had the only answer that mattered. Sam’s breathing had stabilized and soon after the doctors took Sam off the ventilator for a second time. This time it worked. It was a stunning turnaround. Sam had turned the corner; he was on the road to recovery. We thought of it as “A Beautiful Day.” We still do.

This summer Sam joined his first baseball team, the Diamondbacks. The Diamondbacks are part of the Miracle League in Frisco. It’s not your average baseball league. These kids don’t aspire to join a select team. It’s not even about winning or losing. It’s about playing baseball. Playing baseball and having fun. My daughter Erin went to one of Sam’s games and quickly found herself on the field assisting one of Sam’s teammates. The young boy was as nervous as he was anxious. After every play, he turned to Erin and asked “is my father watching?” Erin knew he was deaf in his left ear and so she leaned to his right side and assured him that not only was his father watching, his father was proud of him. I suppose it’s a small anecdote in the scheme of things, but Erin learned something important there. She learned that boys like Sam and his teammate are like all other little boys. They want to play baseball. They want to make their parents proud. They want to be heroes, or in Sam’s case, superheroes.

My daughters don’t see Sam as “special” or whatever other euphemism you and I might offer. They see Sam as a cousin. They play with him the same way they play with their other cousins They love him the same way they love their other cousins. Sam isn’t different in Erin and Caroline’s eyes, he’s just Sam. Growing up with Sam, they don’t know what it means to be fearful of people who are “different” or “special.” They’re not threatened by people who look or even think differently from them. I suspect Erin and Caroline have learned more from Sam than Sam has learned from them. I don’t know if that’s true or not, but I do know that we live a more complete life with Sam as a part of it. Sam isn’t a burden, he’s a blessing. And no one realizes that more than Sam’s brother, Will.

Will understands well the challenges Sam has overcome since coming home. He’s watched Sam work with his physical, occupational and speech therapists. He’s seen Sam come home after a heel cord extension surgery and then watched Sam wear five consecutive toe to upper thigh casts on both legs in the course of five weeks. He’s seen Sam’s feet stretched, taped and splinted. He watched Sam wear prescription shoes (held together by steel rods) that rubbed terrible sores on Sam’s feet. He saw the helmet Sam wore and the hand splints. He’s helped Sam with his wheel chair and in the process learned what it means to be a big brother. More than that, Will’s witnessed the fearlessness that Sam handled these and other challenges. The next time Sam complains will be the first. The Florence and Allison families recognize the obvious here: Sam chose to overcome steep, steep odds and continues the battle every day. We are grateful for the opportunity of sharing a life with Sam, and with Will, Liz and Kirk.

Almost ten years ago, Sam exposed my lack of faith on that hard Saturday night. I couldn’t see the path. I’ve learned not to doubt Sam and promise never again to underestimate him. Instead, I’m content to keep Sam “first in my prayers and first in my heart.” Now and ever more. I know I’m not alone on that score. Nor am I alone in recognizing that there’s more we can do for Sam. When Sam was born, there were no prospects for a cure. There is now. Kirk and Liz will appreciate anything you can do to help them raise money for research for Congenital Myotonic Dystrophy. Consider it an investment in the faith Sam has earned.

Sam Plays the Strong Side

Sams Squad — Tue, 09 Aug 2011 18:54:27 +0000

Kirk Florence was a pretty good high school football player. A nasty forearm injury robbed him of his ability to play quarterback but, even then, he was a good enough athlete that he could have played small college ball in someone’s secondary or on special teams. He remains a great fan of the game.

It is no surprise that Kirk talked Liz into naming his two boys using defensive football terminology. That’s surely how it went down, right? Coaches have long called the weak side linebacker in a standard formation “Will.” The strong side linebacker is the “Sam.” The Florence family lacks a burly cousin named Mike to play middle linebacker, but I digress.

Weak side linebackers, Wills, are often defensive stars: free-lancing and athletic players who play against the more open side of the offensive formation in front of them. They rush the quarterback and drop into pass coverage and—the great ones—make all sorts of game changing plays. That fits Will. This is not an unbiased opinion, given that he is my God son, but Will Florence is a dynamic and versatile child. I find him to be exceptional. He’s a playmaker. His charisma and star quality are only undermined by an earnest humility and empathy for others.

The Sam plays the strong side. Why is it called the strong side? Because the strong side linebacker lines up against the strength of the offensive front, simply put, the side with more blockers on it. Strong side linebackers are tough customers. They plug holes, protect the edge and contend with offensive linemen who outweigh them considerably. If that weren’t enough, the Sam also faces down lead blockers: fullbacks, tight ends, pulling guards. The Sam linebacker fights off all manner of impediments to make the tackle or, more often, to free up another person to make a play. There is always an extra obstacle on the strong side.

Sam Florence plays the strong side. There is always an extra obstacle. There is never a chance to take a play off.

But you know what’s funny? Sam doesn’t really live that way. It does not occur to him that he has extra obstacles in his life. We may see them. But he doesn’t. He just plays. He lives and loves and laughs and cries and it never occurs to him that he has been dealt a hand any different than anyone else’s. Isn’t that something?

Like many of you reading this, I have prayed a lot for Sam in his life. It’s been for a long list of things: health, courage, comfort, friends. I have prayed for medical advances and skillful doctors and maybe a miracle or two. But lately, I have dispensed with most of this. It is easier to just say this:

“Lord, let Sam be an example to us all.”

Amen.

_________________________________

Adam Jones is Sam Florence’s uncle.

Blog Entry #2

Sams Squad — Wed, 22 Jun 2011 22:28:23 +0000

Sam Florence is an extraordinary boy with an extraordinary story. He came into the world with the odds stacked against him, but like all the best superheroes, ‘impossible’ is only the beginning of Sam’s story.

While most superheroes are known for one signature superpower, our Sam has been blessed with many. Having experienced the force of his magnetic personality and unstoppable imagination, I can confirm that his ‘superness’ knows no bounds. Storyteller extraordinaire…..friend/defender of animals everywhere (his dog Sally, baby jaguars, hissing cats….that boy loves ‘em all)…I can’t help but smile as I run down the list of my favorite Sam moments.

Superheroes don’t come out of nowhere, and let’s face it, Sam comes from a long line of Florence and Allison superheroes. Magnetic personalities abound on both sides of this family and they’ve taught us all about courage and unshakeable strength in the middle of impossible situations. Knowing this special boy with the larger than life spirit and the family with a relentless focus on what’s possible, I sometimes overlook the fact that Myotonic Dystrophy is still an unwelcome part of their lives. It means more than I can say to support Kirk and Liz in their commitment to MDF and all the possibilities their commitment represents.

I can’t wait to run the half-marathon for Sam on December 4 – - I can’t promise blazing speed or a ‘made for TV’ finish that is worthy of my favorite superhero Sam. My only goal is the finish line. It’s not going to be easy (and heaven help me if my iPod runs out of juice), but I realize that’s exactly why it matters. What a great opportunity to discover the hidden power in myself that reminds me that I can do more.

Sam has never let the impossible stop him….so let’s not let it stop us either. Discover YOUR superpower and let’s join forces to shut down Myotonic Dystrophy.

Please go to Sam’s website www.sams-squad.com and make a donation to MDF.

Angie Moffet

Sam’s Squad Blog Entry No. 1

Sams Squad — Mon, 30 May 2011 05:07:17 +0000

Thank you so much for visiting the Sam’s Squad website! We embark upon this exciting new venture with healthy doses of excitement, humility and gratitude.

Our journey with Sam began in 2002 when Sam was born at Baylor University Hospital. The pregnancy was anything but normal. Sam’s clubfeet were diagnosed in an early sonogram, so we were prepared to deal with that. And Liz seemed to instinctively grasp that all was not well. But none of the prenatal testing yielded any discernible health condition. So we were not prepared for the harrowing experience of watching Sam get carted off to the neonatal intensive care unit (NICU) just minutes after his delivery. Without the life-saving know-how of the NICU doctors and nurses, and the benefit of modern medical advances, Sam would not have survived his first day.

The following weeks in the NICU brought a steady stream of new and daunting challenges: collapsed lungs, ventilators, test after test, tubes and alarms, lots of specialists, a somber baptism in the NICU on an emergency basis, and so on. The doctors told us the odds were stacked against Sam’s survival. On the fourth day, we were told to look into burial arrangements. Even today I cannot find words to express the utter despair of those days. Sam’s fight through these early days really was heroic, and his strength of spirit has never ceased to amaze me since.

The doctors could not confirm Sam’s diagnosis until he was three weeks old, when blood test results from The Mayo Clinic confirmed one of our worst fears – that Sam had Congenital Myotonic Dystrophy, the most severe form of this type of muscular dystrophy. By then, Sam’s health had begun to stabilize. But with this diagnosis came the numbing realization that a “normal” life was not in the cards for Sam. We were buoyed by Sam’s incredibly strong spirit and the unflagging love and support of our family and friends.

Contrary to our nature, Liz and I had to learn to accept the bountiful help and support offered up by our family and friends. We were astounded to learn the depths of love and support all around us – just one of the many lessons learned from Sam over these past nine years.

After a few months, Sam graduated from the NICU to club foot treatment at the Scottish Rite Hospital for Children. As always, Sam weathered the surgeries, series of casts, taping, orthotics, and so on with his customary aplomb. More lessons learned (including our incredible good fortune to have a facility like Scottish Rite Hospital available to us right here in Dallas).

Myotonic dystrophy is not well known. There is no cure. But in recent years, the Myotonic Dystrophy Foundation (MDF) has made leaps and bounds in advancing understanding, support and research for myotonic dystrophy. We attended the MDF empowerment convention in Minneapolis last summer, and came away energized and optimistic. We learned there are scientists and researchers working hard to find a cure or treatment to improve the lives of thousands of myotonic dystrophy patients – from the most severe forms like Sam’s to the less severe versions which affect many, many more people.

With this Sam’s Squad effort, we are going back to the well again. We are calling on your support to help us raise substantial funds for MDF. The Dallas White Rock Marathon has graciously allowed us to use their race as a fundraising platform for Sam’s Squad, and we want to make the utmost of this opportunity.

All funds that we raise through Sam’s Squad will be used to support research for a treatment or cure for myotonic dystrophy. It doesn’t matter if you run the marathon with us, volunteer for the race, or donate directly to MDF. Your support, large or small, will make you a superhero.

We are indeed grateful.

– Kirk