Today I wiped a Buzz Lightyear toy down with Clorox bleach wipes. I washed my 5 year old son’s pajamas and special blanket, and put clean sheets on his bed. Tonight I will bathe him with antiseptic soap (we will call it “special soap”) and then I’ll put him to bed in his clean pajamas and clean sheets. I’m grateful for this list of to-dos from the surgery center at the children’s hospital. I know they are meant for keeping a sterile environment, but for me it’s something to do with my hands while I try to prepare my head.
Early tomorrow morning before most of you are awake we will head to the hospital where my son will have surgery.
This isn’t new for us. In the last five years my son has been under general anesthesia 7 times for both inpatient and outpatient surgery. You’d think it would be easy by now. But the reality is it’s getting harder. Johnny remembers more, understands more, he’s scared, he needs more preparation, more reassurance, and well, it’s wearing on me. Not preparing for surgery tomorrow. I think that will go fine.
The last five years are wearing on me.
There was the initial shock of learning our band new baby would need surgery and have life long medical needs. The GI complication he was born with would have been fatal before the development of modern surgical procedures - that was one thing to wrap my brain around. And then there was a hearing loss diagnosis; that was another. I spent my first 8 months as a parent changing colostomy bags instead of dirty diapers. I tried to keep hearing aids on my infant while I breastfed him. I’ve spent more time in doctors appointments in the last five years than I had in my entire life up to that point.
Through it all I’ve prayed a lot of prayers. At first they were prayers of survival, “Lord, just get us through today.” After the dust settled they turned into prayers that nothing else would go wrong. When Johnny’s colostomy was reversed I began to pray that he would be able to potty train normally. When he started to talk I prayed that his speech would develop well.
I don’t remember the first time I worked up the courage to pray for healing, but I think it was when Johnny was around 18 months old, and it seemed like his mild/moderate hearing loss might be progressing to moderate/severe. I first started praying that his hearing wouldn’t get any worse, and then, a quiet whisper in the dark, “Or, you could just heal him, Lord.”
Heal him. Those kinds of prayers are scary to pray, because what happens if they’re not answered? Does it mean something is wrong with me? Or worse, that something is wrong with my God?
All things considered Johnny is doing remarkably well. If you were to just meet him you would have no idea the things he’s been through. His hearing loss wasn’t healed, and it’s actually gotten bad enough for him to qualify for a cochlear implant. And he hasn’t been able to potty train normally, which is why he is having this procedure done tomorrow. I’ve made my peace with the fact that for Johnny, healing is coming through gifted doctors and amazing medical advancements, instead of the supernatural kind of healing found in the Gospels. Although, ever time I read about Jesus stretching out His hand and healing the deaf man with the speech impediment I get a little pain in my heart.
But I know that God loves Johnny. And I know there is a healing more important than physical healing. It’s that heart-healing we all need so badly. It’s the reason why when they lowered the paralytic down through the roof to Jesus His first response was not to heal his body.
And they came, bringing to him a paralytic carried by four men. And when they could not get near him because of the crowd, they removed the roof above him; and when they had made an opening, they let down the pallet on which the paralytic lay. And when Jesus saw their faith, he said to the paralytic, “My son, your sins are forgiven.” (Mark 2:4-5)
Jesus’ first response was to heal his heart, that is, to forgive his sins. He went on to heal his body because of the doubters who required visible proof of the saving power of Jesus. Maybe my faith is too small and that’s why my son was not healed. Or maybe I have great faith, and choose believe that God is doing something even greater than healing his body.
For all the praying I’ve done, it has only recently occurred to me that I ought to be praying some prayers of healing for myself. I have only recently realized that, like I mentioned earlier, the last five years of advocating and being strong for someone else are starting to take a toll on me. Good things have come from our hardships, to be sure. I have been broken down, my hard edges smoothed out. I have been forced to find a resiliency I didn’t know I had. I’ve learned that there are some things that don’t matter that much, and other things that matter greatly. I wouldn’t say I’m glad we had to go through the things we’ve gone through, but I do believe that I have been made a better person because of them. But for all the good that has come there’s still a wound that I have been reluctant to acknowledge. I’m not entirely sure what it is, but I feel it when I think about what my boy has been through, and what he still has ahead of him.
So here we are, five years in, on the eve of another surgery, and my prayers for Johnny sound something like this: Lord, keep him safe. Heal him in the way that you see fit. Let him do the things he wants to do without being hindered by his disabilities and medical needs. Most of all let him know Your very great love for him.
And my prayer for myself? Well, I’m still searching for the words. At present it is mostly a long exhale at the end of a busy day, and I imaging Jesus saying to me “Come away by yourselves to a lonely place, and rest a while.” (Mark 6:31)