For good or for bad Nevin's birthday will now always be connected with his genetics diagnosis. It is confusing to realize it has been only a year since we got that call. A few things we have learned in that time...
His carotid arteries are not exactly where they should be. They wiggle around on the back of his neck.
He had a submucus cleft palate.
He has a vascular ring. Simply his heart is not shaped normally.
His flat feet, his speech problems, his obsessive tendencies, his hypothyroid, his delayed cognition all are related to his 22q.
I will never lie about it, Nevin is a tough case. He is a hard kiddo to care for.
But we love him and he is ours. I have always and will always protect him like a momma bear.
As hard as it is to look back over the last year it is harder still to look into the future and wonder what it holds for us. Some days look bleak and other days I have hope. I am sure the future will be mingled with both.
I took a map the other day and cut it into a circle, then I took a puzzle piece punch and punched out pieces all over it. Skyler and I looked at the map and talked about Nevin's brain. We talked about how our brains are like maps with roads all over it. Then we took out the pieces and talked about what pieces are missing in Nevin's brain. It was good and it was hard. He wanted to know why it had to be that way and I had to tell him I didn't know. I had to tell him it makes me mad. It makes him mad.
I do believe there is a plan and a path we have to walk with this. I will admit that I am terrified most days to walk it and see where it is leading. But I can not let it consume me or my family.
He is a strong boy and has surprised us in the past and will hopefully surprise us many times in the future.
