Going to my laptop, I don't always know what I am going to write about. I sit and start typing with all the thoughts that have been twirling around my heart and head, perched on the ledge of voice and see what takes flight. It has been awhile since my last post and I'm back feeling like a teenager on my first date. "What do I say?" "What am I doing?" "Who am I?"
I laugh as I silently volley through a conversation between my heart and my mind. My mind is always second-guessing, analyzing, worrying and stressing. My heart knowingly smirks and says, "Slow down, kid, you should know how this goes by now." Seriously, does this make me crazy? I have these conversations daily. My heart usually prevails. It's so hysterically amazing and seriously awesome how a person can encompass two wholes becoming one -- heart and mind.
Many times, people are faced with struggles when the heart and mind are on different paths, not seeing eye-to-eye (that just made me laugh, because they don't have eyes!). During those times, strategically-placed dilemmas wonderfully take shape in our life, just as everything seems to be going smoothly (or so we think). Looking back, these have always been the moments that have radically moved me in a different direction -- and thankfully so -- though those issues/decisions always seem to be the hardest. Asking "Who Am I?" for so many years and truly trying to understand myself and how I operate, I feel that I have come to be quite the expert on ME! I find that most times, I am in peace because my mind listens to my heart and resonates the energy, thoughts and feelings of my song. They are in tune! When they are not, I just "Let it Be!" Making no choice, no decision and not worrying is a decision in itself, and life has a course that doesn't always need a hard left or right. Tonight, Down syndrome, decisions and dancing are on my mind.
Nine months ago, Ryan and I brought Michael into our life. He was born with Down syndrome, which had gone undetected. I am blessed for this missed diagnosis for so many reasons. If we had known, we would have had lengthy conversations weighing pros and cons to moving forward... or not, and then ultimately stressing throughout the rest of the pregnancy about whether we were up for the "job" and "could we handle it?" It makes me sad to even admit that. To admit that yes, there would've been a conversation. Here is why: What I thought I knew about Down syndrome was nothing compared to what Down syndrome IS. A decision would have been based on tests that could be wrong, knowledge of this syndrome taken from a book with health and developmental delays on a vast spectrum and a view that society has bestowed upon us all of having the "perfect" family. I am thrilled to say that society is welcoming a season of change regarding how people with Down syndrome are viewed.
Three years ago Danielle, a very dear friend of mine for the past 29 years, announced she was having a third son. I will never forget Danielle telling me that her tests came back positive; that there was a 90% chance that their son would be born with DS. All of the markers were there. Danielle and her husband moved forward, wishing on every star that their son would be OK. Those months ahead were not enjoyable. They were full of stress, reading and questioning, only to deliver a healthy, happy beautiful baby! Imagine that! Our son, Michael's DS went undetected, but yet, he was born with that one extra chromosome and Danielle's son was given a 90% chance but born without DS. Clearly, a decision based on these odds would be like being in Vegas and going all in on red.
Lastly, reading and learning about DS is unequivocally different from touching, seeing, loving, sharing, caring and knowing someone with Down syndrome. Initially, Ryan and I were nervous about what Michael's health issues may be, but our feelings of utter acceptance and unconditional love never wavered. Neither of us ever asking, "why us?" Or saying "we would've..."
Many people don't know this, but I was born with a very rare kidney disease, Nephrotic Syndrome. This was a disease that had been in my mom's family for generations and ancestors before me had passed away. At birth, it was not detected. But soon, I was living at Tufts Floating Hospital with a team of 16 specialists. To make a long story short, after spending five years of my life in a hospital, my family was told I was probably going to die, but could try this one last possibility, which could kill me or save me. Here I am, living a beautiful life!
What if there had been a test for Nephrotic Syndrome? What if there had been tests for those syndromes and diseases that invade your families? How many of us would not be here if there had been a choice? We may have not be blessed with the likes of Muhammed Ali, President Roosevelt, Van Gogh and Newton, to name a few.
We all have a beautiful life to live! When life throws us hard decisions, sometimes, it's best to "Let it Be." Allowing life to take its course. Just keep walking letting your heart shine the way, your mind will catch up!
I have already learned so much from Michael in the past 9 months. The only "job" to be "handled" is keeping my sanity with three babies and raising them to see past stereotypes, to speak with love and kindness and to walk without judgment. Everyday, Michael's smile awakens my heart and soul even more. I feel happier, lighter, LUCKY! I clean less and party more. We laugh and sing, but most importantly, we dance!
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