Things officially began to go downhill on this day. Isaac awoke and instead of leaping and bounding into my bedroom to joyfully wake me by pouncing on me, he crawled in. He got on the bed, didn't say anything but "Can I watch a video?" I turned on the tv and looked at his legs. The purpura had spread to his knees and lower thighs and his feet and ankles were severely swollen. The purpura was larger and darker now. But he didn't say a word about it. I asked him how he felt and he said he felt fine.
It was Spring Break. Our plan for that day was to meet Isaac's best buddy at the Life and Science Museum aka huge park, zoo, activity center and lots of walking. I didn't know what to do. If I kept us home, I was going to have three angry kids on my hands, crawling up the walls all day long. But mostly I was concerned about Isaac's mental health as much as his physical health. I didn't want this disease to define our life and daily activities. I didn't want Isaac to think he was less than he was before.
And so we went. I took the double stroller-good call. He did run around a little. But he rode most of the day and didn't think much of it. He played as hard as his body would let him, and I just kind of observed. We all had a good time.
That afternoon was his first soccer practice/game. By then he was tired. He was excited though and I am the coach, so we got the shin guards and socks on, tied on the cleats and headed out. During our team meeting I briefly explained about Isaac's "condition" and made sure that everyone knew that he was safe to be around. The kids could have cared less about the purpura (which you could hardly see when covered by soccer shorts and tall socks) but the moms all had that look of "Poor Thing." There were lots of questions. And I understood their curiosity- but unfortunately I didn't have many answers.
By the end of practice he was too tired and swollen to walk. His legs bothered him for the rest of the evening.
Moving forward we decided to allow Isaac the ability to do whatever he wanted to do, if he felt like doing it. Our doc and all of the literature continued to reinforce that there was absolutely nothing we could do to make this better and so I figured there wasn't a whole lot we could do to make it worse. And so busy we stayed!
Advice: Don't stop your life. Keep busy!
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