My son had his biannual check-up with the paediatric neurologist today. I dread these appointments because they bring back memories of sitting in Children's Hospital realising that our lives would change forever. They bring back the feelings of loneliness and isolation we battled (and still battle) to accept the path that befell us, a path no parent would choose.
I dread these appointments because I always enter with high expectations and leave disappointed. I come in with a list of concerns to address - I keep hoping for the doctor to give me a key that will unlock the door I am banging my head against, but every time I leave the doctor's office I realise there is no key. I must continue banging my head against the door until perseverance finally breaks it down. And that will cause a lot of pain and bruising. The cost is high - almost too high - yet there is no other way.
The fact is, parenting a child with special needs is lonely. It is an isolating journey, because in a sense, no one can relate to what you're going through, as each child is unique. Is it worth it? Of course it is, but when I'm feeling raw and wounded, please don't placate me with bumper sticker encouragements: God put him in your family; there are no better parents for him than you; God causes all things to work together for good. I know those things. What I want to know is that someone will still love me when I melt into a puddle of goo on the floor because I don't have the strength to go on. I want to know that someone will sit and cry with me and say, Yes, this is hard. I want someone to validate my anguish and listen without having all the answers. And I want someone to intuitively know when I need vanilla ice cream topped with peanut butter for dinner.