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Finding our rhythm

Today marks the halfway point of Des’s “induction phase” of treatment. We’ll be 14 days into the 28-day period.

I have no idea what the upcoming phases will look like (the doctors are wise to let us know what we need to know for now). But this phase is medicine-heavy.

Des takes meds three times a day. He has a dedicated section of kitchen cabinet as his own personal pharmacy. And 100% of those meds score a zero out of ten on the taste scale. Do these big pharma companies even have taste departments?!

And let me tell you something about Des; even before all this, he was a picky eater. He hates broccoli (and most other vegetables), which I guess is a normal kid thing. But he’s even turned his nose up at meat and get this…cheese. The boy doesn’t like cheese.

Until very recently. Since he’s been home he’s been all about cheesy bread and even sliced cheese. Maybe one of his blood transfusions was from Wisconsin or something. I don’t know.

But his picky palate makes medicine tricky. We’ve tried mixing it with pudding, jello, cottage cheese, cheese dip, Lucky Charms, fruit juices, apple sauce, chocolate sauce, peanut butter, and pie. We’ve only succeeded in totally ruining all of those foods for him, probably forever.

So when you pray, please pray for Desmond to get better at taking medicine. Or that we find a magic food that makes it taste better. Or that he can stop taking some medication sooner than expected.

For the rest of this week, we’re trying to get some kind of rhythm of being home. Sleeping. Getting Luke and Solomon to school. Getting some work done. Keeping the house clean. Getting Des to his appointments. Medication. Meals. Mouthwash. Baths.

It’s a lot but we’ll find our rhythm eventually. Or maybe not. Maybe we’ll just feel overwhelmed for a while and rely on the grace of God and family and friends to carry us through it.

Those boys are still getting to school on time, though…

At the end of each day, we look back and see bright spots. We see Des’s goofy personality break through the moodiness from the steroids. We see brothers being patient and generous with each other (at moments…). We see a familiar smiling face bringing a meal.

God is pulling our hearts to focus on gratitude and hope. Yes, fear and worry are there. But just like a mother singing to her son whose belly hurts from medicine, God is helping us through the pain by giving us something beautiful to think about instead.

Categories: Uncategorized

Matt

2 replies

  1. On Sunday, your dad was telling me about Des having to take the horrible tasting medicine. You have my deepest sympathies and haven’t prayers!