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NOSTALGIA, JOY, FEAR AND HOPE

3/30/2016

18 Comments

 
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For those who remember it, 1980 was an incredible year! That first year of the Eighties gave us the Miracle on Ice, Pac-Man, and President-Elect Ronald Reagan. It erupted with Mount St. Helens, the Iran Hostage Crisis, and the launch of Cable News Network (CNN). It even entertained us with The Empire Strikes Back, Blues Brothers, and AC/DC’s Back in Black to name a few, while tragically stealing rock legends Lennon and Bonham before their time. But, what I remember most about 1980 was being on the cusp of adulthood as a high school senior, including lifelong memories of Rubino’s Pizza, Papa’s Carryout, and parties at Strong’s. I remember night guarding (and poker) at the Bexley Pool, teaching youth baseball, and leaving front doors unlocked in the safety of a small town. For my generation, those were the good ol’ days. Life was simple, active, and exciting, and our futures were wide open.
 
However, as I reflect today on the memories of my seventeenth year, I do so with mixed emotions. Sure, I’ll hold onto those times and keep them close to my heart. Of course, I’ll reminisce and treasure the lifelong friendships. That will never change. But, now, those memories also bring a touch of melancholy as my son, Alex, passes that beloved milestone this weekend (April 3) while living within the grips of Duchenne Muscular Dystrophy.
 
On one hand, I am certain to celebrate his birthday as most parents do. When Alex awakens, I’ll jump on his bed with enthusiastic well wishes. I’ll dance and sing and tickle and tease until his face cramps with laughter and he begs mercy to breathe (note: there is no better sight in the world than Alex’s face during an uncontrollable, deep, belly laugh). I’ll appoint him King for a day and grant him most any wish. Later, as a family, we’ll celebrate over whatever meal Alex craves (probably Five Guys, Red Robin, or Steak ‘n Shake). We’ll help him open presents of video games, movies, or anything related to Star Wars or Batman. We’ll enjoy a dessert of his choosing (can you say DQ Blizzard!). In all, we’ll make his day as fun and memorable as possible because he deserves as much.
 
On the other hand, I will mask certain emotions, those I don’t want him to see. I’ll hide the heartbreak of another year gone by under the weight of Duchenne. I’ll disguise my concern for the next as he grows another year older. Because beneath the showering of smiles, laughter, and love, birthdays with Duchenne smack with reality of terminal disease. With each birthday, the someday of Duchenne grows closer. With each celebration, the gulf between dependence and independence grows wider, deeper, and less forgiving. With each year, we discover new obstacles, frustrations, and chapters of this merciless disease that become our new normal and settle as unwelcome fixtures in our lives.
 
None of us know our exact time. We just know it's someday and hopefully someday far from now. But, for kids with Duchenne, the weight of someday becomes heavier with each muscle loss, labored breath, and weakened heartbeat. It becomes more threatening with each sniffle, mucus drainage, or chesty cough. No matter what you do, living with Duchenne is like being strapped to an unstoppable, slow-moving, train on a downhill, shortened, track. As the train gains momentum, you increasingly experience bumps, twists, and turns, as you ride helplessly and blindly to the end, wherever that may be. Such a life can be terrifying.
 
…if you let it.
 
If there is one thing I have learned from our budding 17-year-old, it’s that life – no matter how tragic, shortened, or still – CAN be enjoyed to the fullest. Whether it’s fitting for hand splints, fist-bumping a complete stranger, or petting a dog, Alex has shown us that we CAN turn the simplest experiences into the best. We CAN find the joy in anything and hope in everything. He shows that our lives are not measured by years, milestones, or achievements, but moments, smiles, and love. Alex proves that life is not about waiting until things get better or racing to the next day. Life is about seizing, living, and loving…THE NOW!
 
I say this because we are lucky to see it every day. Caring for Alex allows us to experience how he absorbs each moment and any opportunity. It allows us to witness his love for anyone he meets, his want to communicate with sincerity, and his willingness to share a smile without invitation. Caring for Alex allows us the opportunity to hear his laughter bellowing from his room for the slightest of reasons and at any hour. It allows us to witness how he makes the most of his time while he has it.
 
We should all learn from this.
 
The tragedy of parenting a boy with Duchenne is that as you experience this life lesson you slowly lose your son – the teacher. It is heartbreaking. But it is also rewarding. That is why I blog. That is why I intimately share Alex’s story. If you know him, you will understand. If you have never met him, I hope someday you will. Because, I have never met anyone as upbeat about life, with as much going against him, as Alex. He makes a family proud.
 
So, Happy 17th Birthday, Alex!
 
Seize it! Live it! Love it!…every moment of it…as we know you will!
 
Oh, and about those stories of your Dad at seventeen….don’t believe any of them!



18 Comments

GOTCHA!

3/2/2016

8 Comments

 
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Life has a way of providing incredible memories. Although some, no doubt, are of the variety you’d like to forget, it's ones reflected in your smile and tone of voice that are most sustaining. It's memories that remind you of your good fortune, despite bumps along the road, that become a part of your soul and weave themselves into the fabric of your family. It's memories that on recall immediately bring joy, peace, or possibly a tear, that are strongest because they are often rooted in love and nestled in your heart. Today, our family reflects proudly on such a memory, as we celebrate the 15th anniversary of welcoming a little boy named Alex into our lives.
 
The journey to adopt Alex was long, as many adoptive families can understand, and surprisingly invasive. Over a year’s time, we endured background checks from local, state, and federal government agencies. We filed paperwork to state and federal secretaries of state, consulates, and judges. We provided our birth certificates, marriage license, passports, powers of attorney, banking statements, investment summaries, and letters of recommendations from friends and family to prove we had the wherewithal to be good parents. We opened our home and family to visiting social workers to prove we would provide a safe and healthy environment. Although we were already parents of our then seven-year-old daughter, Kaitlyn, we interviewed and attended compulsory classes on how to parent. The entire process was lengthy, expensive, and exhaustive. In the end, however, the journey was worth it because few experiences in life compare to the moment we met Alex, whom until then we had only seen on video.
 
THE DAY began early as we flew from Paris and landed midmorning in Bucharest, Romania. Once through customs, we met a polite young man named Alain, who held a CLICK sign to his chest. He graciously welcomed us to Romania and then drove us to our hotel. While Alain indulged our excitement for our family expansion, we asked him when we would meet Alex. He smiled and said,
 
“After you unpack, I will take you to him.”
 
Needless to say, our excitement level soared as we checked into our hotel, dropped off our luggage, and raced back to the waiting car. Alain drove us through the streets of Bucharest to a nondescript building where we parked along the curb, walked inside, and then rode a small, rickety, elevator to the third floor. Elizabeth, our U.S. adoption agency representative, met us in the Romanian agency’s lobby and escorted us into a bordering office…all within two hours of stepping onto Romanian soil!
 
We sat on a couch like eager Americans and waited for Alex and his foster family to arrive. While waiting, we offered mandatory gifts (coffee, diapers, baby items) to help “restock” the Romanian agency’s foster care supplies and “speed up” Eastern European visa approvals. We exchanged pleasantries and awkward small talk with people we barely knew though had tremendous impact on our future. We prepared ourselves for the moment when our little family of three would add a son and brother. Soon, a woman poked her head into the office and whispered something in Romanian. We sensed the moment had finally come. Our U.S. representative smiled, turned to us, and then asked if we were ready to meet Alex.
 
We stood in anticipation, smiles abound.
 
Within seconds, nearly two-year-old Alex toddled into the office, with his foster mother, father, and sister trailing close behind. I can still see that moment in my mind. Alex wore tan corduroy bib overalls, covering a gray sweater and white turtleneck. He wore little dark boots and an apprehensive smile. His foster family was visibly happy for Alex, but clearly sad this would be their last time with him.
 
It’s what happened next, though, that melts my heart to this day.
 
As Alex walked into the office, he and I made eye contact, and a tiny smile formed on his face as if he recognized an old friend. I sat on my heels and returned the smile. Alex immediately broke from his foster mother’s hand, approached with confidence, and then wrapped his small arms around me in a long, heartfelt hug. I looked to Kristy and Kaitlyn. Did this boy just hug me on sight? Tears of joy wanted to fall, but held off while I experienced his loving embrace. Alex then pulled back, took my hand, and turned to show me around the office as if he were showing me his homeland. He led me to a tissue box sitting on a desk and giggled as we pulled one out and blew it into the air. He pointed to decorations on shelving and appeared to explain their meaning. Then suddenly, as if worried I may leave him, he turned back and threw himself deep into my arms for another extended hug. Our bonding was instant, lasting, and priceless. Alex then walked confidently to Kristy and Kaitlyn and hugged them, forming immediate and loving bonds.
 
With each embrace, it was as if Alex expressed with heartfelt gratitude

...thank you for finding me.
 
Our little family, his foster family, and the adoption agency representatives, were awestruck by the beauty of the moment. We marveled at Alex’s love and social confidence, which those who know Alex today will agree he still displays.
 
We then talked with his foster parents, who spoke little English, to understand Alex’s eating, sleeping, and potty-training habits. I distinctly remember his foster mother telling us through her tears and heavy, Romanian-accented English that “He's my boy!” as she proudly referred to him as one of her favorite foster children. Her words rang sincere as did the tears down her face. We thanked her and her family for their love towards Alex before they bravely stood and walked out the door. We stayed to sign some papers, formalize the adoption, and thank the agency personnel. We then carried Alex out of the office, down the old elevator, and outside to a waiting car. Our driver then escorted us around Bucharest while we held Alex and welcomed him into our family.
 
Looking back, Alex’s transition to our family was seamless. No crying or longing for the foster family he just left. No worry or fear of our family he now joined. Although our spoken languages at the time were different, our shared feeling was simply love and unspoken thanks for finding one another.
 
We spent five more days in Bucharest before returning home. We watched Alex dance to Italian music videos on the hotel TV. We witnessed Alex’s social skills with hotel clerks, restaurant workers, and door attendants. We laughed as he devoured everything on his plate from mushrooms to hot carrots to Brussels sprout, as if he had never seen food before. We toured the city with eyes wide open to Bucharest’s poverty, witnessing people scouring garbage cans for food and living inside street sewers. We admired the city’s Parisian architecture, though saw many rusted construction cranes sitting idle since the fall of communism roughly a decade earlier. We realized our good fortune and his, and looked forward to returning home.
 
We refer to March 2nd as Gotcha Day, for obvious reasons, and it always brings a smile to our faces and warmth to our hearts.
 
It marks the day when we met a handsome, social, little boy named Alex
 
…and welcomed him into our family,
 
…our lives forever changed.

 


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