Our son Andrew, like so many other CdLS children had multiple physical and cognitive challenges to deal with in his life. As he got older, keeping him safe became a 24×7 job. Managing his life, was a time consuming, logistically complicated, and sometimes frustrating task. Yet, he also emulated a brave and loving spirit, and a contagious laugh. He enjoyed being taken out in the world, from a carousel ride at the mall to lunch with 5th graders at the local school, he so enjoyed his social routines. Nonverbal yet he had an awareness of his surroundings and possessed a sensitivity that was evident when he would seek out those people with a loving heart (sometimes resulting trying to climb up onto their lap). We respected that and tried though it was not always easy to never talk about his issues in front of him, something in the busy life of a special needs caregiver one can always do. He loved listening to music, people singing, children in particular and playing his Casio keyboard. His naps and bedtime events would often begin with a read from a few books out his bin of favorites. He loved the outdoors, dancing and singing with his mom on our deck, taking long stroller walks or riding in his bike trailer thru the various parks and trails. To sitting in a pile of leaves in the Fall or sled rides or trotting thru fresh deep snow in the Winter.
One of the things we were made aware of after he passed, was the fact that his life mattered. That as unique as he was, he was still able to influence people in a positive way. A person would mention that their experience with Andrew had left a lasting effect on them. We think that is a pretty cool legacy for our son to leave behind in this world.
As his primary caregivers we don’t miss all the ‘stuff’ Andrew had in his physical life. But not a day goes by that we don’t miss his gentle spirit.