As we head back to school this week, I am reminded yet again of the truly amazing team of physicians, therapists, teachers, and babysitters that surround Zella daily. Thanks to their encouragement, in the last few weeks of summer Zella has hit milestones we never believed she would reach, namely walking. Simultaneously she has struggled with new self-injurious behavior, but team Z has pulled through and everyone is working hard to cooperatively manage these new challenges.
Zella is loving her new preschool program at Apparo Academy. Teachers and staff have already gone above and beyond to make her feel right at home in her new space. If it takes a village to raise a child, it takes a sprawling metropolis to raise a child with ADNP syndrome. The only way to fully recognize the level of support required is to spend your days in Zella’s world – something her teachers and therapists at Apparo know well.
Outsiders scoff and assume our utter incompetence at parenting when they witness her tantrum in public. I used to concern myself with their shenanigans. Now I pity these people. You know. The ones who have the answer to every question. The ones who have already discovered all of life’s secrets. The people who raised “good kids.” The ones who believe there is only black and white, never grey.
These outsiders don’t actually care about Zella or those like her. They won’t take the time to hear her life’s story or see the tiny victories and miracles along the way. Some of these people have lived a life of relative physical and intellectual ease, a foreign concept to Zella thanks to a ruthless gene malfunction that has robbed her of so much.
The outsiders are loud.
Zella’s team is louder.