Our son Vince had a corrective chest surgery in Germany, because there was less than 0.4 inch space between his spine and sternum. Due to the deformity of his ribs his left lung was in danger, so we set out to go to Hamburg, where the Altona Children’s Hospital took on the surgery. A month passed since this surgery, and we are getting ready again, this time to head home.
We knew we were risking a lot, because the last time we came home, we didn’t make it into our house, we had to go straight to the hospital. Vince couldn’t handle the strains from his long journey after a fresh spinal surgery. This time we did everything humanly possible to avoid going from hospital to hospital. We asked for God’s blessings for the trip, and we turned the car into a private ambulance (breathing machine and suction machine in the car cigarette lighter version, oxygen tank, tracheostomy tube accessories, pulse oximeter, etc.).
I pack the car with more and more bags, a thousand times I think about any possible scenarios that can face us on the road and how fast I will be able to react. I try to place everything within reach, because in the case of hypoxia (lowered level of oxygen) every minute counts. I used to have every hair on my head turn gray in a situation like this, and I was impatient with Vince and my husband as well. But now I feel that an inner calmness takes over, and it whispers into my ears that everything is okay. Of course I see flashes of my son’s chalk white and sweaty face from our last trip, but by trusting in God’s grace I have a stronger faith that says ‘you are safe no matter what happens.’
Our life brings a lot of trials, and we often say we cannot go on like this. During packing I remember a difficult time from the winter when in the midst of having a fever and a lot of pain for days, I still had to take care of my son who was also very sick. I thought I wouldn’t survive those weeks and I kept praying for the pain and the exhaustion to stop, for the hardship to end, no matter the cost. God sent me a message from the Bible at that time:
“No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.” 1 Corinthians 10:13
As I organize our things in the car, I remember this verse again. So, if this is the case, even if I suffer in body or spirit for a short time, at the end I can be certain of salvation.We drove six hours twice, Vince ate and played lying down, and we made it home safely. Again we received grace. Of course we needed our creativity to modify the car, but God led our every step.
I have often experienced that I need to rely on my creativity, but now I know that it wasn’t only me but a true and faithful Friend in God who helped turn my ideas into reality.
Here is a little list including but not limited to all the things I have enjoyed God’s grace in:
- in our rented apartment I used a spoon to fasten the plastic bottle of the breathing machine to the ceiling beam and here at home drainpipe clamps to make sure the water flow is adequate
- I fastened Vince’s swing to a beach shower, monkey bars, terrace beams, etc., because there was no swing on the playground Vince could use as his legs don’t bend and he cannot sit up alone
- I punctured a baby flair chair, so I could make a potty chair out of it with the help of a beanbag, a dish and a safety belt
- I attached the sitting corset to a bobocar, so Vince could encounter the experience of cycling alone
- I put a harness on Vince during horseback riding, so he wouldn’t feel my had as I supported him, but he could completely give himself over to the movements of the horse
- I punched a lot of little holes on a polyfoam mattress, so Vince could lie on his back on the water with his head touching it, but his trach not getting wet
- I put a baby carrier on the other way around (after putting it on, letting the top side fall on my legs), and I kept twisting the clips until I was able to fasten Vince in a way that he was in a standing position in front of me