Eden and Raspberry Kisses
I just spent the afternoon with my sweet little friend Eden, his brother Elijah and his parents Jeff and Naomi. Eden has big blue eyes and a toothy grin. He is especially handsome today because he is sporting his first big-boy haircut given to him by his mom who had a little assistance from a tutorial on YouTube. He is a happy, loving and charming child. He is also quite funny. I know he has inherited his father’s sense of humor because of a story Jeff tells about his little boy’s love for noises brought on by bodily functions.
Apparently, the whole family caught one of those nasty stomach bugs this past February, and for the first time in his almost two years, Eden was as sick as a dog. He was having a hard time keeping his food down -- throwing up everything he ate. At one point, with nothing remaining in his stomach, his little belly muscles just heaving, and due to all of this hard work, he let out a rather large “toot” from the opposite end of his body. Being a little boy --as well as Jeff’s offspring -- he stopped vomiting and immediately started howling. He thought this unexpected blast of flatulence was the funniest thing ever, and he promptly forgot his tummy troubles. I suppose laughing at the passage of gas – even at this young age -- makes him rather “normal.” Except that Eden is not what some folks would call normal. He has “Up” syndrome.
What is “Up” syndrome, you’re wondering? This is a name created by a six year-old boy named Jonathan who co-starred with his 7 year-old sister in a documentary called “Deedah and Me” at the recent Sprout Film Festival in Charlottesville. The annual gathering features films made by and/or about people with disabilities. Jonathan – wanting no part in being referred to as having Down syndrome – instead chooses to call it “Up” syndrome. Thinking of himself as enthusiastic and energetic, his take on the name is brilliant!
Down syndrome is actually penned after John Langdon Down, the doctor who originally diagnosed the condition, but I get Jonathan’s point. I have never known a person with Down syndrome to be very down. In fact, I believe our friends with this genetic condition are here to keep the rest of us up – to teach us what is and, more specifically, what isn’t important in life. My friends with “Up” syndrome are compassionate, quite humorous, and they often bring out the very best in those around them.
Jeff and Naomi feel that Eden is a gift and a reminder to all of us to be more caring -- not just to those who are different from us, but to everyone in our lives. After all, taking care of each other is what people do best – when we remember. And the movies shown at the Sprout Film Festival every year are also beautiful and poignant reminders that maybe we are all more alike than we thought. We all long for love. We all need to feel needed. We all crave laughter. When you think about it, life is really that simple. It’s just that many of us complicate things by taking on too much and rushing through our days.
Eden, so perfectly named, is not designed to be in a hurry. In a lot of ways, he is luckier than most of us. He will learn to walk and talk a little later than his friends, but he will catch up. In the meantime, he’ll be soaking it all in – enjoying the discoveries that come with every day. As he grows, he’ll push himself to tackle obstacles and to take on new challenges -- just like other kids – but unlike many of us, he won’t sacrifice friendship or family to succeed. Eden was programed with the very best of priorities – love and compassion.
Eden’s big brother, Elijah, is nine years old and -- like most kids his age -- he is constantly testing his parents as he tries to figure out where he fits in the world -- turning every conversation into an argument and every suggestion into a debate. When it comes to Eden, though, Elijah is a different child. He adores and dotes on his little brother. There is no doubt he will one day cheer Eden on as he learns to ride a bike and be there to pick him up if he falls. He’ll teach him to throw a football, and he’ll hold his hand on the playground. And in turn, Eden – always the flirt at the grocery store, cooing at everyone he sees – will encourage (almost force) his shy older brother to make new friends.
I always find it hard to leave when I visit Jeff and his family. We don’t see one other often enough, and I lose track of time catching up and laughing at Jeff’s jokes. After spending the afternoon with Eden, saying good-bye was especially difficult. He had me pegged the minute I walked in the door – here comes a baby-lover! We played catch with a bright blue-yellow-red felt ball, and he showed me his brand new Jack-in-the-Box toy. He was especially fascinated by my Smart phone, so together we pushed the buttons and made a video of him which he watched over and over again, clapping and giggling with every viewing. As a finale, he showed me one of his very favorite tricks – blowing raspberry kisses on his dad’s cheek, which as you can imagine, makes a sound very similar to his other very favorite noise.
As I sat down to write this blog, I could still feel Eden’s little arms around my neck and the weight of his perfectly petite body on my hips. Already I missed him. I looked back at our pictures from earlier in the day and began to wipe the raspberry kisses from my phone – the sweet, messy reminders of our time together – then, instead, thanked the Universe for Eden and left them there.