Day 444

day 444

Benji’s steroid pulse ended today. He’s rocking his typical Prednisone look: red face, puffy cheeks and belly, warm skin, wide eyes. He fluctuates between sweetness, hunger, and dramatic upset. But mostly sweetness. His muscles and bones get sore from the steroids, and his body is a little more achy than usual tonight. He took a nice long epsom salt bath. I packed a little extra potassium in his lunchbox for tomorrow.

We’d talked about doing several things as a family today–possibly Busch Gardens, maybe another Rays game, or going out on the boat with Kathy and Gana–but instead, we ended our Spring Break with a full day of spring cleaning and working to help the boys prepare for school. I deposited a full carload of things we no longer need at our local Goodwill. The boys paused for fun here and there, including a water balloon battle royale, a fine way to say goodbye to a week off from school.

Truth be told, our responsible decision made me a little grumpy toward the end of the day. Even though it feels great to have accomplished as much as we did, a day on the water or at the ball field would have been infinitely more enjoyable. My inner whining came to a screeching halt when I stopped at my computer to glance at Facebook before dinner.

Dear friends of our friends and neighbors experienced an unthinkable tragedy yesterday. Their house in Virginia burned completely to the ground, and their two sons were trapped inside. The children are gone. The parents survived and are recovering in a burn unit, with no home and no children to come home to. I don’t understand how anyone could process such a thing. It hit me hard, and snapped me right back into serious gratitude.

Many people have expressed to us that they don’t know how we deal with a childhood cancer diagnosis. They somehow think that they would be unequipped to do so. I tell them they are wrong; you deal with it because you have to deal with it. There is no alternative. There is work to be done. Reading this story tonight about this family makes me so appreciative of our work to be done. So much of their purpose is gone. I can’t imagine the sheer effort it will take for these people to rebuild their lives through such hurt.

Still, without love, there would be no hurt. The deeper we love, the more pain we feel. I would never sacrifice the love, as much as it hurts when it’s lost. Love is always stronger. I am so grateful tonight my heart feels like it is going to explode.

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