The Little Things

Sometimes the little tiny things hit me hard when I least expect it... even more than the really big things that I can just kind of hunker down and deal with as it comes.

Nathan was looking at photos and videos on an old iPhone that he uses. I kind of lost it when he started to play a video of him and Camryn playing in his room. It was the sort of random silly stuff that little kids take photos or videos of but that's what hit me. This is how life was; none of the heavy stuff we are dealing with right now and they were both so much more unencumbered by the harsh realities of our current situation.

Or when I glance at a picture of how he used to look, before steroids made his face and body "puffy" and when the twinkle in his eye shone just that much brighter. Or seeing him traverse a creek by walking on a fragile log, or happily scale a fallen tree that was so high that it was out of my reach. I realize I have somehow gotten used to this current version of Nathan and all of the limitations on him, and that's truly ok as living in this moment is all I can do, but it doesn't mean I never wish to go back to the way things were... it's more that I cannot truly long for those days for fear that the longing would hurt too deeply right now. And the reminder that we will never be "that" family again is just overwhelming as I don't yet know in what ways we have change although I know those changes are tremendous and sometimes painful to even begin to consider.

How about the day I noticed his hair falling out? Why does such an expected and inconsequential thing hit me right where it hurts? I know it's just an external sign of what he is going through but I think that's just it! It forces me to really see and realize his illness in a very obvious way. As cute as he is bald, and as much as I adore him this way, it's the circumstances that lead to this point that kind of slapped me in the face as I saw my sweet little boy pull out increasing strands of hair as the day went on.

There was a time when a simple blood draw was a big deal, when the idea of even one blood transfusion was unfathomable, when even a short hospital stay seemed daunting, when a virus was good for the immune system, when prescription medications and chemotherapy weren't even on my radar, when when when... I can go on and on and on but suffice it to say those times are in our past and replaced with a new appreciation for the simple things in life and the people who make every day that much more special.  There is such a huge gulf between "then" and "now" that I just cannot reconcile the two and even just to try feels futile. Hindsight is not my friend right now, I need to focus more on foresight for the time being.