Happy birthday Kenyon! Kenyons 10th birthday was Saturday. Ive been away from FB for a bit, but wanted to post this wonderful song sung by Cathy Fink and Marcy Marxer to Kenyon and the other birthday folks Saturday at the Ashe County Blueberry Festival where Liam and Strictly Strings were playing. The song really captures Kenyons spirit. Kenyon makes his appearance at the 2-minute mark with Marcy. Those of you who knew us when he was born, know what a tough time his birth was: premature, learning about Down syndrome, and most of all hydrocephalus which required a 6-hour brain surgery at 5 pounds and 5 weeks of age. I couldnt have imagined 10 days or 10 months down the road, much less 10 years. Over those 10 years weve endured a lot from folks, mostly well-meaning (though misguided) medical professionals, educators, media, and strangers whove insisted on trying to re-make Kenyon into their preconceived notion of what normal is…it always starts with how we should fix him through surgery, therapy, segregation, medication, or whatever, and after a decade weve seen it all from pity to anger to fear of Kenyon: the angry therapist after we rejected sabotage therapy where we were asked to withhold food until he hit a red button, pity from strangers like the one who gave Liam $20 and told him to buy a present for his brother with the problems, and the fear we see in peoples faces as we walk hand-in-hand with Kenyon downtown or at the mall or at a festival, and the quiet whispers that follow as we pass. The negative parts of raising a child who experiences disability is something we try not to focus on, but something we deal with on almost a daily basis. It has caused us to withdraw a bit from society and cling to those who offer support and love. I would be remiss not to note this negative side of the past decade. But there is another side. I love Liam and Janet, but I dont think there has been any greater source of joy in my life than Kenyon. Those who take time to shake hands with Kenyon, or let him sit in your lap, or hug him, or kiss him, or let him kiss you, even on the lips (you know who you are!) or sing with him or dance with him, those of you who have spent time with Kenyon know this joy. Kenyons laugh and touch are healing, spiritual experiences that I can only compare to being in the presence of an Angel on earth. He knows no prejudice and accepts and loves everyone and is willing to share his joy with others. If youve seen him dance, you know what I mean. A quick example of hundreds I could share: last week Kenyon and Janet Parrish Purcell came across an older couple sitting on a bench. The older man was disheveled, misshapen, unkempt, and angry. Kenyon stopped and wanted to touch him on the face. He did. Kenyon stroked the mans cheek, pressed against his body in a one-side hug. The man yelled at Kenyon. But Kenyon insisted on trying to touch him. The lady explained that her husband had Alzheimers and that they rarely left the house. Kenyon knew no fear, no pity, no anger, just love. When the man would let him, between fits of the man yelling, Kenyon touched his face and hands and loved on him. When the man told Kenyon he didnt want any more hugs, Kenyon went and hugged his wife, then smiled back at him. Kenyons intelligences are many and deeper than Ive seen in most others who dont experience so-called intellectual disability. Kenyon has deep emotional and empathetic and compassionate intelligence. He has an intelligence for joy. He has an intelligence for acceptance. Whats a life worth? When Kenyon was born, spent a month in the hospital, underwent brain surgery…racking up nearly a quarter of a million dollars in medical bills…since there have been countless therapists, medical follow-ups, surgeries, etc. Is the life of a baby with brain damage from hydrocephulus plus Down syndrome plus prematurity, was this a life worth this kind of investment by society? As a family weve spent untold hours on Kenyons personal care with little to no respite. We plan our days and travels and lives around Kenyon. Almost every decision we make starts with its impact on Kenyon. Weve given up many personal ambitions, hobbies, friends, dreams, and wishes for Kenyon. Kenyon cant really be alone, so weve arranged our lives so that one of us can always be there with him. After 10 years of living like this, is it worth it? Of course the answer is yes! I dont want to be a martyr, but I do want acknowledge that it hasnt been an easy 10 years, and that society has often made it harder than it should have been. That said, at the same time I have had the privilege of living up close and personal to a beacon of joy that counteracts the evils in the world and makes the world right as rain. Kenyon provides an example of how to live life to the fullest, how to experience unashamed joy, how to love unconditionally, and it is an honor to be in his presence day in and day out. And its not just Kenyon, but the way good people celebrate with him like so many of our friends and family who unabashadly dance, play, laugh, and sing with him and us. Cathy and Marcy sum up what Im feeling at Kenyons 10th birthday with the lyrics the angels danced on the day Kenyon was born. Perhaps angels can see 10 years further than we can. Ten years later I know why they danced, because Kenyon has made the world a much better place by his presence here. And so have the people in our lives who have danced with Kenyon both metaphorically and for real out on the dance floor! I dont know why I write these things. Maybe there is someone right now sitting in a waiting room during a babys brain surgery, or someone is receiving a diagnosis of Down syndrome or hydrocephalus, or someone has a premie, or all three, or anyone who is in confusion and despair during the birth of a child. Maybe they will see this and it will help. Maybe they will find comfort in the fact that angels dance on the day every child is born. It will be ok. Ten hours becomes 10 days, 10 months, and 10 years. Thanks to everyone who has shared this 10-year journey with us. Thank you to Kenyon. Happy birthday to my 10-year-old boy! Im so glad you were born. Im so happy that you are who you are. I love you! youtu.be/ETXCzD6MWFo
Posted on: Tue, 29 Jul 2014 22:48:35 +0000
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