Tuesday, April 1, 2014


It's hard for me to believe that Ella will be turning six years old in a few weeks. On one hand, I feel like we have been through more than a lifetime's share of ups and downs. On the other hand, I think about how often I have heard from the doctors that she is living on borrowed time, which makes me wonder how much time we have left when no amount could possibly be enough.

I know it is not acceptable to talk about your child dying, but it is something you think about far too often when you are the parent of a medically fragile child. It's not an obsession or pessimism, but more giving yourself the occasional "reality check" in a futile attempt to prepare in some way for the inescapable and devastating truth. I know all parents envision their children's futures; it's just that our reality is very different and I have to accept that.

Birthdays are always bittersweet - summoning up those "where we have been" and "where we are headed" thoughts - and when Ella presented with her first loose tooth a few days ago on the eve of her sixth birthday, I was a bit blindsided by the reality of "six." It made me unexpectedly sad, and I was surprised at my reaction:

"Really? A loose tooth? After everything she has been through, *this* is what is going to send me over the edge?!"

But it does seem to be the typical things that get to me more. I suppose I'm used to being strong through the medical trials and tribulations - that is standard in this life - so the routine events catch me off guard. Like a visitor to a foreign country, I'm not familiar with the local customs. The usual childhood milestones only tend to remind me of how different our experience is and how quickly the time is passing.

I really try not to dwell in that place for too long. For the most part, I focus on living in the present and enjoying the now. But occasionally the truth rears its ugly head and makes you stop and think. Like when your child is turning six.

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