First, my disclaimer. I’ve known Scott and the Sands family for more than 20 years. I met Scott’s father during my travels long ago, both of us looking for magic for our sons. I knew well the story of Scott’s family traveling to Florida when he was 23, the emergency tracheostomy, at that time thought to be the best method for clearing secretions and battling pneumonia. Over the years, I have connected with Scott intermittently discussing safe and not-so-safe topics. There was a New Year’s Eve long ago where Scott sent me a question about the fairness of life. I’m not sure he remembers, but I remember the question – “Is life fair, is God fair that on New Year’s Eve, I’m with relatives (mom, aunt, uncle, nurse) singing karaoke, when I would prefer the company of girlfriend?”
I had the same fears for Chris and Patrick. Every mom and dad of every young man with Duchenne has those same fears. What does the future hold? What will life be like? Will our sons have the ability, the opportunity to spend time with friends, find someone they love, have some of the life experiences most of us take for granted?
The messages have continued intermittently over the years, one related to the web-address for his blog. He suggested several names and we both agreed – Scott Sands Alive – conveyed the perfect message. Since then, a bout of Ventricular Tachycardia (VT). His ICD (defibrillator) did not fire, the settings too high. One more terrifying experience in Scott’s life, but, then Scott has had any number of them and gets to the other side, the immediate threat resolved, medications adjusted,and life goes on.
And more recently, Rebekah’s travel, her state of health and the impact of the international flight. Scott met Rebekah Davies online accidently. Someone contacted Scott about a woman with Duchenne, a women who could use a friend, a confidant, someone she could trust. Scott’s been holding up the community for years, so this was no surprise and no big deal. The funny thing about life is that you take one step and then another and sometimes are surprised about where it leads you.
Scott invited me to his birthday some weeks ago. I knew Rebekah was coming. I admit I was worried about her – the long flight, the weariness of travel and unfriendly skies for people with disabilities, let alone breathing issues. I wanted to celebrate with Scott, with Rebekah for a very long list of reasons, thrilled for him, for them, confirmation that life holds surprises, wonderful gifts for all of us.
The best descriptor for Scott is that Scott is determined. I won’t say inspirational or amazing, because I see him flinch at those words. Scott is determined, strong-willed, indomitable, gritty, dogged, single minded,and heroic. Scott lives every day as if it was his only, his last.
I landed in Florida at 6:30 pm on Saturday, the party started at 7. Nicky, Scott’s brother picked me up at the airport. I was nervous and I’m not sure why, maybe all of the motherly worries we seem to stack up about our sons when we think about the future. What would happen? What about tomorrow? What about insurance? What about this? What about that? A broken record in my head repeating the long list of concerns, while another loop repeated, Scott and Rebekah will have it all figured out–the two scenarios circling each other like a dog chasing its tail.
Rebekah is perfectly beautiful and lovely in every way. She lives in a small village in Liverpool. Many of us have been following Scott and Rebekah on Facebook and watched as the relationship developed and flourished. The virtual relationship was obvious, but something more was happening to both of them that would be difficult to translate or satisfactorily express within the snips or phrases of Facebook. They spoke, skyped every day for the last year. They were friends and becominglovers.
Rebekah, like Scott, has little function. She requires ventilation and, at least in my head, would clearly benefit from a 'sip and puff' ventilator. Her own ventilator was confiscated in Manchester, UK just as she started on her journey to meet Scott face-to-face. She knew this could seriously compromise her health and put her at risk while on that long flight to the US, but she didn't care. Meeting Scott was too important and definitely worth the risk. Like Scott, she is no stranger to life and death situations, a cardiac arrest just a few months earlier.
I asked about Scott about plans. He smiled and said, “I'm not sure what will happen. She's here now.” I told him I saw the photos and I’m so ‘old school’ and am always surprised about such private emotion displayed so publicly. He simply said, “It's my 46th birthday. I never imagined I would find a women who could understand. Pure and simple – who would 'get' what it is like and love me just the same. I wanted to feel her lips, no matter what it would take and I wanted it recorded.”
And Lucy, Scott’s mom is amazingly strong, kind, and loving. She is surrounded by family and an enormous circle of friends she has nurtured and grown for the last 30 or so years. Lucy loves, loves, loves Scott and supports his philosophy of life. I'm not sure about a wedding or what will happen tomorrow. They have this moment and hopefully many more. Rebekah is in Florida until August 17. Because of the warmth – the warmth of the Florida sun, the love of this family and Scott – she is able to move her fingers. She said in the cold/damp weather of Manchester she feels like a corpse. Florida agrees with her and while a bit overwhelmed, she smiles as if she has found a piece of heaven.
And as I left that evening, Lucy held my hand, tears in her eyes and said, “Now I have the daughter I always wanted”.
Pat Furlong, Founding President, CEO
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