Constant grief

A friend of mine once said that having a child with a disability is like living in a state of constant grief.

Some days are okay, and then it hits you and you desperately feel the loss of the child you thought you would have. Today is one of those days for me.

Most days I am able to focus on the progress he is making, the joy in his laughter, the beauty of his eyes.

Today I notice the awkward shape of his head. How his eyes cross. How at the age of three, he looks at my lips as I say "Mama, Mama, Mama" over and over and over again, but he cannot make any sound but a moan. As I give him a bath and he splashes and laughs, I wonder what he will be like at 12, and if i will still have to bathe him and put him in a diaper.

I think of my other kids at three, walking and talking and learning to ride bikes and I wonder if Oskar will ever be able to do those things.

Today I grieve the loss of my baby boy.

Tonight I talked to my 10 year old son, Max and told him I was sad and he said " You know what Oskar is,Mom? He's Oskar." And he's right.

Oskar has no idea that not everyone wakes up and has 50 seizures every morning. He has no idea that there is anything wrong with him. He is happy and loved and has everything he needs. And most days, that is enough for me.

Just not today.