Monday was a terrible day for Harrison, meaning a terrible day for his parents.
We discovered that he was entirely unwilling/unable to take oral medications. We tried swallowing pills. Gag. We tried hiding the pills in ice cream. He chews his ice cream (and every other soft food like pudding and applesauce), so he just crunch down on them and threw up because of the terrible taste. We crushed them into a powder and mixed them with every conceivable food he would eat. Same outcome. He threw up 5 or 6 times just trying to take medicine.
Of course, that medicine is THE MOST IMPORTANT HE’LL TAKE to get into remission. Figures.
Then they needed to change the dressing on his port. The port is a device installed just underneath his skin with a line into a major vein and directly into his heart. This will be the place where they will draw blood, deliver chemo, and pass him other medicines for the next three years. There is currently a needle protruding from it covered in gauze and help in place by water- and air-proof tape. If it gets infected, he dies.
Changing the dressing meant removing the tape, sterilizing the area, and reapplying. If you’ve ever had a serious injury you can image how tender and sensitive that area would be. Ripping the tape off, pushing and prodding around, and cleaning the area was excruciatingly painful. Ginger and I just wept as our son begged them to stop while still fighting to remain strong.
Harrison was miserable, and his parents were beside themselves over his misery.
In the middle of it all, a sweet lady came in to walk through with Harrison his “Beads of Courage.” He got a long string and began to collect beads celebrating his successes. One color for getting the port, another each time he took medicine, another for every “poke” with a needle, etc. In the end he’ll have a huge string with his name and his beads, a reminder of the courage he showed kicking cancer in the teeth.
As I listened to this lady, and watched Harrison’s eyes light up, it struck me, “I don’t want your beads.”
We are discovering that the community around leukemia patients and families is unbelievable. We’ve gotten emails from people we’ve never met in Kentucky, Virginia, and Georgia who have been or are going through what we’re enduring (and have to endure for the next several years). Out of no where they have rallied around us. It’s been incredible. I didn’t know this community existed.
The beads now identify us with that world, the world of leukemia.
I wanted to ask the lady to leave and not come back. I want to tell the people who have written that we don’t need their emails. The thousands of text messages, voicemails, emails, facebook posts, and tweets of love and support? No thanks.
You see, those things, like the beads and the community they identify, are for kids with cancer…not my son.
But we are a part of that community. My son is now that leukemia patient who’ll lose his hair, grow big checks, and look a little funny. Ginger and I are the parents who’ll fear every night that our son may contracted an infection and die by morning. We’ll have a bag packed to rush to the hospital every time he has a fever. We’ll cancel trips, drain our savings, and watch our son suffer.
So, he needs the beads. We need the beads. Not because they are magic, but because they identify us with a community of fellow-travellers. Without them, we’ll not be able to endure.
We need the calls, texts, emails, visits, facebook messages, tweets and retweets. Why? Because in every one of them we find a reminder that our Heavenly Father cares for his children. While they all remind us of the hell we are in, they also prove the heaven that life in the Kingdom of God is.
Scripture tells us that the wilderness is a place of disease, destruction, and death, but that the Kingdom of God is a place of life and peace, a place where there is no more crying or dying. And while we pray, “Thy Kingdom Come,” we enjoy the benefits of that Kingdom now in community with his people.
Yes, we’ll take your beads. And thank you very much for them.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
(Psalm 73:25-26 ESV)