For the most part, our lives are unaffected.  Anything that is out of the ordinary for most people (i.e. Jared not driving) is simply our ‘new normal’.  Led by Jared’s amazing strength of character, we choose to feel grateful for how insanely blessed we are instead of focusing on the challenges. A great sense of humor doesn’t hurt either. We’re good.

For the most part.

Then there are those moments.

After Christmas the house was in shambles, it was one of those nights where we were both exhausted and the smallest things were getting the best of us. I had yet to organize and find a new ‘home’ for all the new toys and consequently after finally getting the wild ones to bed the living room was left a landmine for Jared to walk through.  With his peripheral vision worsening it’s that much more important for the floors to be clear of toys, dogs…you name it.

I was in the kitchen when I heard a ‘crunch’ from the living room and immediately Jared’s angry reaction followed.  He doesn’t often get angry and it took just a few seconds for my mind to piece it together. I closed my eyes and sat still for a moment.

I finally walked around the corner to see him holding Buzz Lightyear in one hand, and Buzz’s foot in the other. My heart sank.  Not necessarily because of how crazy Jack was for his new toy (remember this post?) but because I was imagining the mix of emotions that Jared was feeling at that moment.  I know his heart hurt because he broke Jack’s new toy.  But even more so, the anger that so rarely gets the best of him won in that moment.

Not fair. Not fair. Not fair. Damn disease.

Sometimes, it just sucks.

But it didn’t take long though for the sense of humor to kick back in.  Mainly because I could hardly stop myself from giggling when an hour or so later I looked up to see some wayward attempt at welding going on over our stove.


Do you think Buzz looks worried?


I would be (sorry babe)

buzzlightyear-2But there was no way I was stopping this surgery.  It was definitely about more than just fixing a toy.

Jack Dillon – you have the BEST daddy.

(all better now)