Of Blood and Bone

This morning my two-year-old son woke up crying and grabbed my hand “Mama my belly hurts. Bubba and Mama pray.” 

I hold his tiny calloused hand, much stronger and more substantial and nicked up than what I’d imagine an average toddler that doesn’t have to use his hands to move, and we pray, “Lord God, heal Bubba’s belly in Jesus’ name. Help his belly feel better.” Both God and I know that when Bubba says “belly” he means his bladder. This is before I stick a tiny plastic tube up his urethra. I tell him as he squirms as cheerfully as possible, “this is because the pee is stuck and we have to get it out so that it stops hurting your belly!”

I distract him with the song, “Yes Jesus Loves Me.” My songs and prayers are doing a lot of heavy lifting these days.

I haven’t had time to write since May because I’ve been round the clock nursing and mothering a joyful and very personable baby that doesn’t like to be put down for more than five minutes. “Miss May, you’re so easy to love!” And she is, and she also is someone that requires a lot of personal attention and affection. But like a steady stitch in between these sleepless moments, there are hospital trips.

My babies are very used to packing into the car for the three hours it takes to get down to Indianapolis. Every week, almost, we have had to drive to the hospital. We’ve seen neurosurgeons, urologists, gastroenterologists, orthopedic surgeons, rehabilitation doctors, made appointments to get fitted for a new wheelchair, been admitted to the ER for infection that spread to his kidneys, and two weeks ago, underwent a bladder reimplantation surgery to cut and then reattach the left ureter back into the bladder to stop the urine backing up (refluxing) to the left kidney.

And now the improvement we were seeing in his legs are gone. They were finally getting circulation, he was finally (miraculously!) taking his first steps in a gait trainer to our hysterical screeches for joy, and now they’re limp, they feel like they’re all joint-  made up of elbows– or heavy like a pile of kindling– when I carry him he feels alive only from the waist up.

And for that I weep for him.

And even worse still, my husband Trevor took him to the ER on monday night, staying till midnight to place a giant, clunky Foley catheter in because he’s not urinating enough, his bladder is now not working as it should. I’m home nursing a baby and fielding calls to doctors in Indy, I’m living my life on hold, hearing the same irritating loops of music – the Riley’s one is this piano bit that sounds like a question mark, the one for his pediatrician is this weird scat-scat-scat percussion that’s equally off-putting, but it has become another anchoring stitch in the fabric of our daily lives. 

I don’t think they like me very much. I am never so fierce, never so put-me-on-the-phone-with-your-superior-now as I am working with Riley’s Children’s Hospital. The name itself is like a skinned knee or a paper cut, and the urology department has a special ability to incite my rage. I feel like a caged tiger, I pant and pace back and forth but I am enclosed on every side. I growl and roar but there isn’t anything I can do. We could have chosen to leave him on antibiotics for years until his gut and immune systems are carpet bombed out of existence and he contracts pneumonia and the antibiotics don’t work–? 

Or we could do the surgery, it was supposed to “fix” the problem. But like a hydra, you do one of modern medicines “cures” and you create three more problems. Perhaps I’m cynical, but perhaps I’ve experienced too much. Teddy Bubba now has to pee through a straw. He’s still on amoxicillin. And now his legs are numb. 

We have come to the painful conclusion that we cannot control his body. We make our best prayerful guesses as to what the right treatment is, but we can’t know it. I am on my bruised knees so often. I am praying up at the wooden cross I oil-pastelled the words “Jesus,” “hope for the world,” “healer,” “the lamb,” “the lion,” “LORD OF ALL.” I traded listening to political podcasts to going through and listening to R.C. Sproul’s sermons around the clock, and if not him, then the Bible is being read from the Bible app, and if not the Bible, we’re singing or listening to hymns or worship songs, and if not that, I’m on the phone with one of my beloved friends and we’re talking gospel, praying, laughing.

In spite of these horrors, we have found unspeakable joy. Teddy Bubba and Miss May and I, we’re all cracking up on the floor together. We are dance-dancing to 90’s-era Steven Curtis Chapman, we are praising God. We don’t belong here.

We currently reside in bodies of blood and bone. We are weak, pathetic, sin-stained creatures. But we are learning of eternity as we struggle, as we pray, as we lament and cry out to a Holy and omnipotent and perfect creator God who has revealed Himself to us. We ask our high priest, the Lord, Jesus Christ, to have mercy on us. And if we must suffer in our blood and bone bodies, we will make sure our children know the Lord better than anyone else. My son’s first memory verse is John 1:5 “the Light shines in the darkness and the darkness has not overcome it.” 

And every night we pray Psalm 91 together. 

My son’s tiny calloused hand holds mine, and we pray to the Lord whose kingdom we belong to. We are more than blood and bone.

We are eternal things.