The First Time

I remember, so clearly, the day I was told my child had a disability. It was an explosion of emotions. Some emotions were conflicting which didn’t make acceptance occur in a smooth motion.
I was so terribly upset that my child should be singled out for this rare disorder. By the time I got home, from the hospital, I was shocked to realize that I was really upset that I had been singled out. My child would wake up still the same the next day but I never would but how was I going to cope with this. It was the most selfish thing I ever felt.
Then I was angry – at just about everything. I was angry at how the Doctor had “coldly” informed us. I was upset that the only thing my ex-husband was concerned about was our child’s ability to have his own children. I was also angry that before we were even out the door he was looking for someone to blame for this and it was me. Neither of which were his fault because he didn’t realize he was disabled too.
I was angry that I would have to deal with, yet another problem, when I still wasn’t over the last one. I was angry it was my child and not someone else’s. Silly me, since there are millions of “someone else’s child” out in the world.
I was relieved. Man, how relieved I was and ashamed at my relief. At last I knew what was wrong. My son’s disability had a name and I had something to start on. I was relieved that it would give me direction towards what to do next and that “next” was to find out as much as possible about this disability.
I felt vindicated that after all the years of saying, “Something’s not right here.” I was right. Not an “I told you so” – right, but more like, “Hey my intuition was heading me in the right direction after all.” I knew I had been okay in trusting my instincts, as a mother. Previously I found, that the more things that went wrong with my child, the more I was apt to blame myself for maybe something I had done.
I was excited about the challenge of finally making headway to learn what I needed to help my child. I had a direction to march off to and it would only mean more help for me and my child. At the time, I just didn’t realize how much help it would mean for me.
After feeling all these feelings I then realized how self-centered all these emotions had been. This was the first time I realized, as a parent, how disabled I was. I would have to learn parenting all over again. My expectations for my child had to completely shift and I had to re-examine my own life expectations. I was no longer the part-time guardian of my child till he became of age. I was probably now going to be the life-time guardian of my child.
This thought brought on a whole new spate of feelings, which I promptly shut down. I wasn’t ready to look at this aspect of my disability yet. Right now my child was a child and he needed me to be strong, focused and to most certainly dig out my sense of humor from my toolbox. I had a feeling that for the next several years I was going to need it.