Zucchinia, Leukemia

At supper tonight, Caleb was talking about one of the medicines that he hasn't used in a while (lactulose--helps move his system along). I could see the wheels turning in his head as he thought about what he should do with this bottle of meds. Suddenly he exclaimed, "I know, Mommy! We can give it to someone else who has Zukenia!"

Immediately after the Zukenia quip, possibly to distract me from my fit of laughter, he asked about another medicine I am currently giving. "Mommy, will Septra help me when my ears are plugged?"
His ears get plugged? This was news for me: "Do you ears get plugged, buddy?"
"Yeah, they do."
"When does this happen?"
"At nighttime, when I do this" at which point he stuck his fingers in his ears. The earnest look on his face assured me he wasn't trying to be funny.

It was a fantastic end to a trying day. We are still adjusting to our new normal. Probably because this will be normal for so long, I am having a harder time absorbing what we're living. I am grieving long the things we're losing and have lost to leukemia. It's hard not to send Caleb to school. It's hard not to participate with our church the way we have in the past. It's hard not to pick up and travel to visit family that we love. Many others who experience health issues of any kind know this pain.

There is a time for mourning and a time for dancing. While we mourn these losses, we are also aware of new opportunities created by our new life. Ultimately, we choose joy and we'll dwell in the gifts that we receive in our new normal. A few gifts of late:

-Our neighbours. We are getting to know them more and more. We love our street and the people who live on it. We are learning to care for each other and we feel their love.

-Gymnastics class for Nella and Aleah. We noticed Nella's love for tumbling and jumping this summer and enrolled her in a class that started today. The way it worked, I ended up in a parent & tot tumbling class with Aleah. This will be special time for the girls and I, as long as we can keep it going. It was an extra gift for me to be able to notice Aleah's need for my one-on-one attention too.

-Hair is growing on Caleb's head. In this last week, since camping especially, I was concerned that Caleb's head was extra dirty and I just couldn't seem to wash it clean. Today I realized that it's hair growing on his head, not dirt. And it might be red again, too! Many kids maintain a thin carpet of hair over their heads through treatment.

For now, Caleb is experiencing some side effects to his steroids. The good side effects cause him to eat, and we're thankful for that because it keeps him robust for upcoming chemo. But this morning he had leg pain that made him cry and want to just lay down all morning. I was very concerned, but was able to get in touch with our clinic nurse and was able to give him something for the pain. His later afternoon was much better than the first part of the day. Nella and Aleah have a cold right now, and I'm concerned about what will happen if/when Caleb gets it. We'll know this in the next day or two. It was bound to happen sometime, that sometime is now. Pray that he stays healthy and fights it off before his counts drop next week.




This is a favourite picture of mine, even though the quality isn't great. Caleb and his friend Jonathan are playing guitar. Taken back in June, it's possible to see how frail Caleb was beginning to look, yet he and Jonathan sang and played with joy. Jonathan plays a ukele, and Caleb a guitar. They talked music all morning that day. "I like your ukele, Jonathan." "I like your guitar, Caleb." We celebrate the gifts of music and friendship, which we haven't lost.