I Am Determined To Know

Sitting in this smallish room closes the world down to a microcosm of both space and time. John's bed takes up maybe a quarter of the room, John taking up 1/2 of that and seemingly more each day as his tissues hold on to fluids. Behind that is a bank of IV pumps, 13 last I counted, with bags and tubes and syringes full of medicines to support his blood pressure, suppress his immune system, fight off an infection, replace calories and help support his body with steroids. The dialysis machine is not quite as large as the bed and is continuously running blood in and out of John's body. The ventilator is on the other side of his bed with blue hoses running to the tube in his mouth and of course numbers and lines on the screen that indicates how much he is being supported by it. There are drawers full of medical supplies, computers to do charting, at least one nurse and lights that never get turned completely out. On the side of John's bed, when there is not an acute crisis going on, there is room to sit with my feet propped up and hold his hand, read and do the blog. Mark is sitting a few feet away in a rocker and we have a little set of cubby holes that we have some stuff stored in, most used is my Bible and our hymnal.

There are moments in here when it is scary, our eyes are fastened to the monitor watching John's blood pressure bottom out yet again, wondering if this is the time that they will have to call for the crash cart again. There are moments when we wonder if we will ever see his smile again and that gleam of mischief in his eyes. Fear can easily overtake us, and yet in the midst of all of this is the same little boy we know and love, with curls that are getting longer by the day, gorgeous eyelashes that you can see from the hallway, and despite the swelling and tubes and bandages recognizably John. It is in the moments of fear that we are most thankful for our friends who seem determined to speak Jesus to our darkest fears.

For I determined to know nothing among you, except Jesus Christ, and Him crucified. 1 Corinthians 2:2

We need these words of comfort more than ever before, they are our lifeline to the world that is outside this small room. They help lift our eyes from the monitor numbers and hoses and rushing to save John again and remind us that John is safe, he is firmly in the hands of Christ who created him and saved him from his sin. It is comforting to know that John is zonked out on medicines enough that he will have no memory of this and that despite the occasional yellow tear that runs down his cheek he is not scared, it is just a physical reaction of his eyes.

Tonight we got to ask some questions of a nurse who spent the time to talk with us and help us understand some things. She assured us that she has seen children this fragile and this sick recover, it takes a very long time and many days of waiting and lots of baby steps in both directions, but it has been done before. She also told us the plain facts to the questions that I needed to ask - if John is dying will we know it in enough time to get a Pastor in here, and yes, unless he codes again and then probably no, they could support him for a few minutes but then he would be gone. If he gets another big infection or has another huge insult to his body, like organ rejection or such thing they have some room to move on life support but not enough to compensate for something very large. So as long as things are pretty peaceful and the steps backwards are small and not more frequent than the steps forward it is still possible to have our smiling amazing little boy back with us.

We hope to not have to cross the bridge of losing our little boy, but we know that it is possible and so I want to before sight of that bridge looms before us assure you that if John dies it will not be because of a lack of prayer, or faithfulness, or any failing on the part of medical staff, or you or me or others. It is not God's will that we die, or become ill or sick, it is certainly not God's will that beautiful little boys who can bring a smile to anyone who sees him should die, but it happens and John is a very sick little boy who is right now both critical and fragile with little room to move.

Tonight we hold tight to a hymn that our friend here suggested that I read and meditate on. She is ever faithful to speak Jesus to me and so I want to share the first verse of her chosen hymn with you.

LSB 741, Jesus Christ My Sure Defense

Jesus Christ, my sure defense and my savior now is living
knowing this my confidence rests upon the hope here giv'n
though the night of death be fraught still with many an anxious thought.

This night we hold on to hope for living, for John living long many years as the joy and smile in our house, this night we hold on to hope that no matter what happens that Christ is John's sure defense, ours and yours.