When Coley and I found out about Juniper’s genetic makeup we were told that she 'would most likely' require care for the rest of her life. Which, of course, meant that we may need to care for her for the rest of our lives.
Of all the pills I had to swallow to cope with the reality of my new future, this one was one of the toughest. It was the one that got lodged in my throat and poked at my insides. The one that felt like it was blocking my airway, blocking a pathway. The one that made me feel like I was holding back vomit and tears.
I was raised in a culture that tells us to work our hands to the bone and expect a payoff later. That was supposed to be the promise of the American Dream: Work hard and suffer now and there will be peace and rest later. It’s OK to stay in the dark, because there is light at the end of the tunnel. We created social security, senior citizens discounts, pain pills, heaven, retirement - all as ways to make peace with the social and psychological suffering we must endure throughout our lives.
“So, pick up heavy bricks or a heavy pen and get to work,” they tell you. “Get your hands dirty.” And I did just that (well, a touch screen instead of a pen, I guess). I got to work. Coley and I both started working administrative jobs right out of college. After spending four years in school for psychology we did what the majority of psychology students do: We got jobs in completely different fields. I took a position as a technical analyst (still don’t know what that is supposed to be) and Coley took a job as an account manager.
Since then, I've worked eight to nine hours a day for thirteen years. I've put in all my cards, marbles and cents to squeeze the pennies out. Over time, we’ve done well from a financial perspective, but this kind of “progress” always comes at a cost. Politics and logic had already taken most of the relief I hoped I'd get later, and it's only a matter of time until it's all gone. All the while we've kept a roof over our heads, but how many roofs have we sat on to watch the stars?
As I processed the idea that Coley and I may need to take care of Juniper for the rest of this life, over time, I have realized that the idea was a pill that would be hard to swallow indeed, but it wasnt just a pill. It was medicine, and it was just the medicine I needed. Life takes a lot away from us. As a parent, it might even feel like it takes away your kids one day (I know my mom would say this).
Spending time with my girls is a gift. Quite the opposite of taking something away. I just want them to be happy, with or without me, for forever and a day.