I am haunted by a photograph. It’s a picture of me in the nursery standing proudly beside the crib we had bought that day. Fourteen months after our son was born, he was diagnosed with Williams syndrome. The girl standing in that nursery is now gone. I wish I could go back to that moment and gather her in my arms, that ghost of myself, and warn her that her heart would soon be broken into a billion pieces. I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive.
Louie will be three in June. He doesn’t yet walk or talk. The parents of children with special needs live in a constant paradox between realism and hope. I have let go of many of the expectations parents typically have for their children. As I drive by soccer fields on a Saturday morning, families scattered about with folding chairs and coolers, I realize yet again, that probably won’t be us. I have accepted that we won’t go car shopping on Louie’s sixteenth birthday. Maybe it’s a defense mechanism triggered when one cares for a child with special needs. It seems negative to those on the outside, but to me, it’s my suit of armor. And I need it for the battles I fight as I advocate for my son and of course, the battles I fight within.
This tiny child, with starry blue eyes and a lopsided smile, looks to me to meet his every need. Many times, it’s a guess. And other times, it’s what I believe he needs, what he undeniably deserves. My voice does not waver when I let people know that when they use the word ‘retard’ as another word for ‘stupid’, what they are really doing is insulting an entire group of people – those with the medical diagnosis of mental retardation who simply cannot organize themselves and fight this offensive use of the word.
Now I sit confidently at the head of a conference table during school meetings. I ask the hard questions. I require accountability and endure the awkward silences of confrontation. I document things. I follow up. I learn special education law and memorize Louie’s rights. I am an advocate for someone who deserves an education, to have a chance at independence and above all, to live a valued life.
I’ve come to realize that there will always be those moments when I revisit the hurt. Graciously, the pain subsides and I am reminded of who I am. I am Louie’s mother. His voice. His advocate. This I believe. More than anything, this I believe.