My son, Madden, was diagnosed with Angelman syndrome before he was a year old, February 2014. As I’m sure you could imagine, it was a very tough day and attempting to put it into words wouldn’t give it the gravity it deserves. To find out that our son will have “special needs” his entire life was a lot for new parents to comprehend. It’s the fear of every parent but after grieving, for our perceived loss not his, we knew we were lucky to have discovered his rare condition early to capitalize on early intervention. When telling the story of our child having specials needs, it usually starts off quite sad and tragic but I assure you Madden is blessed in many ways. He’s limited in function but rewarded with grace, happiness, and a loving family that will surround him with care and protection.
The “Gift of Helplessness” is something most people experience briefly early in life with a newborn or much later in life caring for an ailing parent. It isn’t until those challenging times do we grow and find new depths of our love, connection and provided the rare opportunity to serve someone that gave us everything physically and emotionally by carving out a new space in the heart that didn’t exist before they entered or left this world. I had no idea the effect this Gift has on the way we look at life. I only know how it effects how we live it…with more purpose, more direction and less time only thinking about one’s own well-being. The impact Madden will have on our family is endless. He teaches us something every day and he makes anyone that knows him a better person.
I often think about what wonderful gifts Madden will give his twin brother Declan and younger brother Conrad. Not birthday presents or Christmas presents but gifts that make them richer in life. There’s no question they will be better men with their brother Madden by their side and experiencing the “Gift of Helplessness” early and living everyday providing unconditional love to their brother that he returns without words, because there really aren’t any needed.