Todd and I were in a transitional year when we learned Isaac’s genetic diagnosis. He was doing a one-year fellowship in the medical center in downtown Houston, and we were living, temporarily, in Clear Lake. We didn’t have a friend group locally or a church, and I knew I needed to talk to someone who could offer us some hope and comfort. I reached out to Rev. Lisa, the priest at St. Stephen’s Episcopal Church where we’d visited a few times, and we went to see her within days of receiving the initial phone call (see We Found Something). 

I will never forget something she said during our brief visit, which was heavy with tears—Isaac’s and mine. “You are having to learn now,” she said, “what most parents don’t learn until their children are teenagers and some parents never learn. And that is that you do not control your child.” 

I have always appreciated the sober truth of that statement, because it helped me to imagine real acceptance without ignoring or downplaying my grief. For me, true hope is always based in reality (not in sugarcoating, sidestepping, or avoiding it).

Shoot for the moon

We attended our first conference with Dr. Sprouse in Annapolis, Maryland, in the summer of 2009, an experience I reflect upon in The Staircase, a blog post for the Focus Foundation. Isaac was 22 months old at the time and had just started walking. 

There was another family there with a boy just a few years older than Isaac whose story had been featured in their local newspaper. In it, the mother said that her first and only concern upon learning her son’s diagnosis was his life expectancy. She wanted to know that he wasn’t going to die, that the prognosis was favorable for a long life span. I’ve always thought her response was more noble than mine, which was fear that I was losing my life. But the truth is, receiving hard news about your child is trauma, and I’m not sure there is a right or wrong reaction. 

That same news story highlighted a couple of Dr. Sprouse’s favorite sayings: Dylan [this particular child’s name] will write his own story. And … Shoot for the moon. Even if you miss, you will land among the stars.

I shared that article with my dear friend, Tiffany, when we returned home. Not long after, she typed out those sayings in bold print, using Isaac’s name, and framed it for me: 

“Isaac will write his own story. … Shoot for the moon ….” 

I kept that framed print where I could see it every day for years and still treasure it. Isaac is, indeed, writing his own story. I’m just helping to tell it.