Finding Joy as a Parent to a Child With Sanfilippo Syndrome
Do you experience joy each day? I can honestly say my daughter Keira, who has a terminal illness called Sanfilippo syndrome, experiences joy and bliss at least several times a day.
Usually these moments are the result of something minor like our neighbor’s dog chasing a stick or just the word “cupcake.” I often wonder why it is that Keira is so happy when I know how much discomfort and frustration accompanies her life. Perhaps that has been the wrong thing to wonder about…
Maybe the better question is why I don’t feel joy as often as she does. I used to be joyful as a boy, but as time went on and I lost the naivety of youth, I built up the twin bodyguards of cynicism and sarcasm to protect myself from the difficulties and setbacks of life. And if I am being honest, I often allow the daily grind of work and adult responsibilities to outweigh and hide my most basic and intrinsic inner joy from breaking through. But now, as I witness the ravages of Sanfilippo stealing the logic, language and reason away from Keira, I have seen laid bare the core instincts of human nature. As all her material wants and needs begin to fade way, I have learned what remains, an unfettered and incorruptible joy.
As our family moves forward, I am going to try harder to tear down the walls and barriers built up over the years and let my inner joy shine through. I want to soak in all those simple moments with Keira and hear the most natural sound of a good belly laugh.
Will you join me and let your #InnerJoy shine through?
More about Cure Sanfilippo Foundation at: www.CureSFF.org
Dave is an IT Consulting Executive at a global firm and has recently discovered that his oldest daughter, Keira, who is just 5 years old, has an untreatable and terminal genetic disease called Sanfilippo syndrome. For the first time he is dealing with a number of issues and unfamiliar emotions that no parent should have to face. However, as Dave and his family are re-planning and re-thinking their future, they are discovering that there are still new life lessons and wonderful experiences in store for them. Life lessons that need and deserve to be shared with others as they are forced to come into contact with their own challenges. Visit his LinkedIn page here.
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