As you can imagine, we have had to work through a slew of issues over these last months and continue that work daily. One of the most powerful for me has been the complete demolishment of my assumptions about the brain and it's value in terms of making us who we are. I don't think I had realized how integral I assumed the brain to be to my identity. I got straight A's from 1st grade on, valedictorian, scholarships, good teaching jobs - these things felt important to me and so much of the praise I received was for my intellect. Not only that, but I had good sense, a creative bent, and an interest in deeper thinking. That was who I was and I think I was proud of it.
And when we got pregnant, I just knew that our child would be advanced in every way. And we would be so proud.
So when my brain turned on me and everything about who I thought I was was vaporized by a scalding anxiety and crushing despair, what was I left with? I remember sitting on the toilet lid with my head in my hands crying and crying because I couldn't control my own mind. My intellect was broken and my sense and creativity were powerless against this consuming monster. It was like mourning the loss of myself.
And now Collin's prognosis includes the opposite of what I expected for him. Major delays at the very least. He can't do most things other babies his age can do. Maybe he will stun everyone and advance in surprising ways. But maybe he won't. Maybe he will never even talk. And how will that affect how I see him? How will it impact his identity?
Of course, the easy answer is that it won't affect my love for him at all. And that is true. But think about what that really means. If your loved one changed in some way - if your child didn't look at you or smile at you, if your spouse suddenly didn't care about anything she used to love, if your friend somehow lost the ability to communicate with you - what would that do to your relationship with them? What would be left of them to love?
One day, my dad was rubbing my head while I cried and told me that this didn't really change anything important. That sounded like a ping of clarity to me. Of course, that isn't to minimize the psychological pain I was experiencing or the seriousness of the situation; it's just to say that there is something else to us. And it's not a leftover - it's an essence that is easy to confuse with other things in a culture that teaches us to revere intelligence and being the best at something. I guess I always believed in the spirit or soul, but those are words that are too obscure to use meaningfully in everyday life. But when my brain failed, there was still something left that was unaffected by that change. I discovered that, inexplicably, I was still Annie.
I love Collin. Not his brain or his skills or where he falls on any percentile chart out there. I am proud of him, whether or not he ever excels at anything or learns to read or walk or talk. Just because he is Collin.