Things are frightening right now.
From a mother’s perspective, there are two ways forward through this cancer journey: the road, and the swamp. The road is a human construction. It has a certain linear rhyme and reason. It is made up of small stones, each stone a specific decision, fact, place, the face of a doctor and his credentials, a medical test, or a statistic representing the level of potassium in the blood. The road is made up of things we can understand and see, and it leads us -we can only assume- somewhere. I have tried to choose the road as my way forward. I have tried to focus on the stones beneath my feet in order to better understand the nature of the journey.
There is the road, and all around it there is the swamp. The swamp is the deep, swelling questions about God, fairness, fate, and more than anything, the free-fall of helplessness and the fear of loss.
I spent the night in the swamp tonight as Jack struggled to breathe, needing suctioning from the nurses at intervals which no longer made any sense. His breathing rate increased despite adequate oxygenation. He seemed to struggle to get the air in, yet at times wanted to play with his rattle. His pressure spiked and dropped while he was sleeping- no obvious cause anywhere in sight. A less-than-empathetic nurse (the only one we’ve had so far, thank God) simply waved my frantic questions about what was wrong with Jack’s lungs away, saying, “it’s neurological”. I don’t think she realized that her carelessness about this was all it took to throw me off of the road into a night of terror.
Jack seems to have stabilized after midnight, and is now resting comfortably with his stats finally back in acceptable ranges. The doctors’ plan seems stretched dangerously thin. Right now, the mainstay of it is “make it to Monday” which is when the pathology results will hopefully be in. There’s even been talk of starting chemo up right away.
I’m not sure if I have found the road again or if I am groping towards it. But there is a certain kind of shelter, whether on the road or lost in the mire of the swamp, and that is thankfulness. We are so thankful for our son Jack. He and Sam are the joys of our life, and somehow these long nights don’t diminish that.
Another source of comfort is all of you. We have learned of a convent in Belgium and of a Buddhist monastery which are praying for Jack, as well as countless prayer groups, friends, and family. Thank you all for sharing this journey with us and for lending some part of your spirit to Bounce Back Jack. Thank you all for holding up a light that can help illuminate the road for those who love him.
UPDATE; 3:43p.m– Jack has remained stable throughout the day. neurosurgery team reports that yesterday’s MRI showed Jack’s ventricles have shrunk just a bit, indicating that the cerebral-spinal fluids are stabilizing. His drain started to seep a bit, which was concerning, but the team here isn’t too worried about it. Jack is pretty irritable, but mostly stable. Breathing remains a major issue.
I wanted to post this picture that was sent to me by my cousin’s girlfriend, Lidia, a wonderful member of our family: