There isn’t a day that I wake up and don’t think about Down syndrome. It isn’t the first thing on my mind anymore as in the early days of having to set the alarm to wake Tobin for middle of the night feedings. But slowly as I enter my world of consciousness, the realization settles upon me. It isn’t a moment that I necessarily recognize but it’s there. I’ve come a long way. I used to open my eyes and feel an ache in my body that I would soon attribute to the fear of what our new reality would be. Today its just in the back of my thoughts. But that is not to say that it doesn’t drive my each and every action or reaction. I want the best for Tobin. I want him to be like my other children. I want him to feel loved. I want him to know joy. I want him to love God. I want him to understand what he means to our family and his community. I want him to feel important. I want him to achieve milestones we wouldn’t even think twice about with our typical children. But I am scared of wanting it too much. I am afraid of feeling disappointment for him and about all of these worldly measures of success. I am afraid of putting all my eggs in one basket. I am trying to hope for the best, expect big things and empower him to reach high goals. But I am also trying to keep an open mind. I want to be able to think outside of the box. Ultimately, its that flexibility that is going to be an asset to Tobin (and all my kids for that matter). At the same time, that’s not an easy thing to do for me. I am a planner, a list maker, box checker, organizer. Look up “type A” and you’ll see my picture next to it. And so the struggle wages on between being what I know best and being what is best.
And as always, I pray that God will equip me.