Let it shine

Caleb loves to sing and make music.

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Last week I tried to capture his energy on video as he ran and sang at the top of his lungs, "Faster, faster!" he called as he sang out. Notice his running on the spot at the end of the clip; he was full of energy that day. Caleb is especially excited as this week we hope to begin violin lessons. Not going to school means there are other opportunities for him, and violin/piano lessons is one of those opportunities. We found the tiniest little violin for him, and currently we don't know what to do with it, but we look forward to learning what this is all about. I've listened to children practice violin, and I think I may need to use those earplugs we brought for hospital sleepovers, but the noise will be happy noise. At least it's not bag pipes.

It's been a hard week. We've been asked why there hasn't been a very recent blog posting, and that encourages us that people continue to care and pray for Caleb and our family. We have not had energy, after this week of steroids, to do much more than get ready for the next day. Caleb takes steroids, Dex, for the first 5 days of each round of treatment. The fifth day was today. Steroids can have lots of side effects, and this time, for the first time, Caleb experienced a lot of leg pain, exhaustion, and moodiness. Many tears this week. We tried to distract him by spending a day with Aunt Sara and Uncle Ralph and their family at a festival in St. Catharines, but even watching Uncle Ralph get dunked in a dunk tank was not enough to distract him. (He liked the soup, though) It was hard to watch him snap at his loving cousins, only wanting to be on his own or on Mom's lap. We were able to give him some Tylenol and even Ibuprofen (not recommended for those with low blood counts) to help alleviate the pain, and it worked, until it wore off. This morning I gave him his last dose (imagine how difficult it is to willingly give him the med that is causing such heartache and pain) and I look forward to a brighter day tomorrow.

Caleb's trying to smile in this picture, because I told him to. Can you see it?

This morning also had something new to deal with, learning of the death of a child that I know from clinic. The relationships that we make at the hospital are unusual, and we don't always get to know the name of the parent bringing the child. My name is most accurately "Caleb's Mom." I don't know the boy's family well, and I won't share the boy's name, but I had looked to this family and this boy as some inspiration for us. When Caleb was quite sick, I watched this little guy whiz around the hospital with his plasma car. He's my inspiration for Caleb's riding the trike to the hospital. I was caught by surprise that this little guy had passed away, and the pain and grief is unique and difficult. It's difficult to describe here just how this feels, but my pain for his parents is real. It doesn't feel rooted in fear for my own child, because each child, each family, is writing their own story. My grief is more of knowing how hard we, as parents, fight to do everything we can for our children, to raise them and make them strong and blast back the blasts, but it sometimes isn't enough. And there, there is pain too deep for words. I grieve for this family and pray for strength for a new day.