“So God created mankind in his own image, in the image of God he created them; male and female he created them. God blessed them and said to them, “Be fruitful and increase in number; fill the earth and subdue it. Rule over the fish in the sea and the birds in the sky and over every living creature that moves on the ground.”
Genesis 1:27-28

Oh, God, but you didn’t say man should rule over man. How could we decide if Vince should have a surgery again or not?

I’m tired. We came home yesterday from the children’s hospital in Hamburg. My feet still won’t support me properly because of the “seasickness” I got after traveling 14 hours by train. I pray myself into sleep early in the morning, and I wait for answers from Jesus. I tell Him that there is no emergency like we had at the time of Vince’s spinal or chest surgeries, now I am only thinking if we should take advantage of this year with no operations and use it to remove Vince’s tracheostomy tube. The process of decannulation (trach removal) is not difficult. With a small surgery the doctors remove the proud flesh grown on the larynx wall because of the trach, then once the scar is healed, they remove the tube. Then they observe him in the hospital for a week, checking if he breathes well on his own, if he coughs up mucus okay, etc., and if all is well, we are released to go home. The question is more for the following year: what if he catches a cold? How will he manage that? Will he be able to cough up secretion? Lord, who am I to make a decision over such an important thing? The doctors, who studied about this for years so they could make such a decision, are uncertain, then who am I to make a determination? During previous laryngoscopies the doctors took Vince’s trach out for a few minutes, and in that time he was breathing nicely on his own, through his nose and mouth. Nevertheless, no one will take responsibility, which I perfectly understand, but then where is the point at which I can say let’s do it? Then soon after my prayer God’s first answer arrives:

“For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay.”
Habakkuk 2:3

We go to Germany for control every four months. This time they adjusted our son’s implant along his spine to follow along with his body growth. He also had a laryngoscopy, because they wanted to see if after last year’s chest surgery Vince’s lung had developed or not. The examination showed that his left primary bronchus is still under pressure, but nevertheless, his entire left lung is in use. God gave us another miracle!
This year there is no plan for a new surgery. We expect the next chest surgery to happen in 2018. That time the doctors will remove the chest plates, or if Vince was to deteriorate, they will perform another corrective surgery and will keep the platinum plates in for two more years. In 2020 we foresee another spinal operation, because by then Vince will be so tall that the extendable rod will need to be replaced again as it will reach its maximum extendibility.

I remember, when Vince was born, they called in a surgeon whose child was also born with arthrogryposis. He told us not to be anxious, this was the worst part, things would only get better, because he was going to develop. Then he whispered into our ears that his child had been operated on 18 times.

Jesus calls us to have freedom. But how do I find the freedom of decision if my son’s life is on the line? If I try to solve this by thinking realistically, I go for the sure thing, to keep the trach and have a rest this year without all kinds of surgeries. If I go at it with positive thinking, then I find myself saying mantras day after day, saying Vince wasn’t sick all winter long, he didn’t miss kindergarten due to any kinds of viruses, let’s keep up the good work! But God offers us a much better plan. He has shown His greatness at the spinal and chest surgeries. He says ‘no matter what road you take, I will be there with you and will make sure that no matter the life situation you might find yourself in, that will be the best one for you.’ In reality he calls me to make any decision I want, because He will always be there with me! And this is freedom! You simply cannot make a mistake, if you hold Jesus’ hand all the way! So I keep praying, I wait for further answers, and in the spring we will need to make a decision…

“That person is like a tree planted by streams of water, which yields its fruit in season and whose leaf does not wither— whatever they do prospers.”
Psalms 1:3

Do you think these are just words? If you have any doubt, close your eyes and imagine the following situation: It’s May, the rhododendrons are in their full splendor in the streets of Hamburg. In a few days I will turn 40, and this is not a spring sightseeing tour, my little boy is going to be soon pushed into the operating room. During the four-hour surgery they are planning on completely opening his chest, breaking his ribs and putting in two platinum plates in order to increase the 0.35 inch space between his sternum and spine. We sit in the waiting room with my husband. Our palms sweat. I keep praying. The surgeon arrives and asks for my husband’s cell phone number. He tells us not to wait here, because this is really nerve-racking, we should go and have a little rest, and he will call us once he is done. We head out to the accommodation inside the hospital reserved for parents, and we lie down in my husband’s room. In 3 and a half hours we wake to the call of the surgeon. He tells us he finished sooner than expected, everything is alright, we can go to meet our son outside the operating room.We could talk about a lot of things right now, but I only ask you this: can you imagine that while your son is being operated on you peacefully sleep in a modern hotel room amongst soft bed linens?

“In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety.”
Psalms 4:8