The Beautiful Life of Gwen

By: Dad

     Gwen couldn’t walk. Gwen couldn’t talk. But this did not define her. She was a beautiful little girl who radiated personality if you knew where to look. To me, she wasn't just a child; she was the best teacher I ever had. Gwen imparted invaluable lessons about life, ones that are difficult to articulate but have undoubtedly made us all better in her short time with us. Her spirit and unwavering determination illuminated every room she entered. Despite facing physical challenges, her vibrant personality shone through, leaving an indelible mark on all who crossed her path.

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     When we decided to start a family, it was the easiest decision of our lives. We went to the first sonogram full of joy and excitement. However, the following morning, as I returned from physical training to shower, Melissa and I received devastating news. The anatomy scan reviled brain abnormalities thus starting our challenging journey. We began our frantic search for answers, consulting numerus doctors. One day, Melissa had a prenatal MRI in Kansas City. In the waiting room, I caught myself staring at a young father with his little girl. She was sitting in a wheelchair waiting for their MRI. She would sit there with her mouth half open not a care in the world. When she would cough it made a scene. The suction machine was making a loud noise, the pulse aux beeped and the father scrambled to suction her and make her feel comfortable. After a few hours Melissa came out and the daughter and father went in. This is the first time I have shared this story with anyone. I think about that family often. It was an eerie feeling, foreshadowing of our life and daughter to come. That family became a reflection of ours. Nobody understands what it is like to have people staring when Gwen would have an episodes in public. It provokes a sense of curiosity in people, unsure of what to do. Some people projected pity in there eyes and some people projected resentment and a sense of disgust. Yet, Gwen guided us though all of these moments, an exceptional little girl navigating a world built for the “normal”. She dictated the course, and we traversed life's obstacles together.

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     We brought Gwen in to the world knowing it would be a difficult life for her and our family. We were told she never stood a chance. We were warned that she may not breathe by herself at birth and that at this point in the pregnancy 80% of people would terminate the pregnancy.  But we gave Gwen a fighting chance and her life was nothing short of beautiful. She fought bravely for every day she had. She has touched the lives of so many people. Her impact extended far beyond our immediate circle; people from across the globe have been touched by her presence: from Kansas to Missouri, New York to Georgia, South Carolina to Texas, Wisconsin, Pennsylvania, New York, Florida, Louisiana, and beyond. Although Gwen's abilities were limited, she possessed an extraordinary ability to touch the hearts and souls of those around her.

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     Melissa and I have always prioritized palliative care for Gwen. We always fought to make her life as full as possible for the time she had.  We wanted to enrich Gwen's life and allowed her to experience joy and fulfillment despite her challenges. It was about adding life to her years, not years to her life. I think we gave Gwen a lot of life for the short amount of time she had with us.

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     Gwen did stuff! Our motto was always, “Gwen does stuff”. We never wanted Gwen to be chained to a bed. She did stuff.  I would argue that Gwen accomplished more in her short six years than most people sitting in this room. Gwen has been to petting zoos and got to pet all the animals, she cruised the Meramec river on a boat, got to pet stingrays at the aquarium, she has touched snakes, turtles and baby alligators at the zoo, she been to Uranus (the fudge factory) and took silly pictures with her cousins. She caught turtles in the back yard with dad, Gwen touched the St louis arch and took the elevator to the top, she’s been apple and pumpkin picking, she visited independence hall and posed with the liberty bell, she took a stroll through central park, she experienced the feast of San Genaro in little Italy, she explored giant water falls from the top, bottom and underneath, she played on beach, went sleigh riding in the snow, caught a bass on a Barbie fishing rod, hiked up bear mountain on my back, she petted cows at Martins dairy farm, hiked Letchworth state park (the grand canyon of the east), received VIP treatment at Pittsburgh museum of natural history where they brought out dinosaur bones, teeth, and animal pelts for her to feel, she attended a Penguin game in buffalo, she enjoyed the VIP Disney experience, and felt the mist of Niagara falls on her face. Gwen truly lived a lifetime of experiences.

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     We gave her every opportunity to explore the world, yet today is still difficult. We all wish Gwen was still with us. What gives me comfort is I knowing she will no longer need to endure any more surgeries, 11 is enough. No more seizure, no more ambulance rides, no more extended stays with her friends in the PICU, even though we love and share a connection with all the staff. In counsel with our priest in NY, he said once she was baptized the stain of sin was washed away forever and that she is incapable of sin. She lived every moment of her life without sin.  In her final hours, she was confirmed and took the name of St. Marian, the patron saint of resilience and steadfastness in the face of adversity. This was fitting as she is the toughest person I know. When I asked about her last rights he told us she did not need them because she was innocent. This was a great relief and assurance for us. In the end, her passing was beautiful. I will never understand how she remained so beautiful inside and out though all the pain and suffering. I look forward to the day we can meet her again and witness her total transformation.

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     Gwen could not walk, Gwen could not talk. But now. . . she can talk, she can sign, she can walk, run, and dance. She is free from pain. She is healed.

 

                                                                         ~Samuel Lombardo