I Want My Miracle

“Never tell a young person that anything cannot be done. God may have been waiting centuries for someone ignorant enough of the impossible to do that very thing.” G. M. Trevelyan

Nick continues to struggle with the decision about the biopsy. I am uncertain as to what is the best way to help him. I feel helpless to ease his burden or his suffering both physical and emotional. Nick has been "stable," however, his breathing has not shown any signs of improvement since he has been here in the hospital. Nick's status has not returned to the baseline he had prior to coming into the hospital, which was not great, but, better than now.

Nick has been in a holding pattern for the past ten days. It feels like the doctors are giving Nick two options, the biopsy surgery or nothing. This may not be the case, but, this is what it feels like to us. They have not presented a plan as to what they would do if Nick chose not to have the biopsy done. The choice may appear simple to them, but, it is quite complicated and the procedure is fraught with danger and outcomes we may not like. I cannot tell you how horrible it is to feel "trapped" into making this "lesser of two evils" choice. Ultimately it is not just about the "test." It is about all the bigger life issues that come with choosing to have the test or choosing not to have the test.

There is nothing in life that prepares a young adult to make a choice like this! There is nothing that prepares his Mom, his Dad, his sister, his girlfriend, his family and his friends to help one make a choice like this. I keep asking myself why, why why??? If you believe in higher powers trying to send some message...I cannot figure out what message that would be. I am powerless to help my own child. I have done everything I know how to do and yet, it is not enough. It is a feeling of such anguish and pain that it regularly brings me to my knees and makes me want to curl up into a ball of sobbing mush.

I have no patience for the ruminations of medical science. I have no care for the limits of their ability to fix what they have done. How dare they shrug their shoulders at us and tell us in somber and hushed tones that this biopsy is the last thing they have in their bag of tricks. Is this one trick that is left the one that will work? There are no guarantees either way. God knows we are clinging to the tatters of our shattered hopes and dreams with all the tenacity and strength we can muster!

I once read a book entitled, "It's Good To Know A Miracle." It was another mother's story about her daughter who successfully navigated this pot-hole ridden path, they call a "cure" for leukemia. I want Nick to be a MIRACLE too! I want Nick to have a reprieve...I want the red phone on the wall to ring. I want it to ring now...today! This is too much for anyone to have to bear.

Nickolas is staying positive and strong, but, it has not been easy for him. Please pray for him to receive the guidance, mercy and strength he needs to move forward. Since he has been in the hospital, he has just been marking time. He is awake and completely present, but, physically, his lungs and his breathing are keeping him on bedrest. He hasn't been getting out of bed at all. He will sometimes sit at the edge of the bed or sit up in the bed to eat. His appetite has been steadily declining and he has not gained back an ounce of weight. His oxygen requirement is not too much higher than when he was at home, but, now he is just lying around in bed...not moving, standing, sitting up etc. There is really nothing that they are doing for him right now that is making a difference in his breathing situation.

For the most part the nurses have been very good, although Nick's care is minimal so most don't spend too much time in the room. There are a few nurses here we like very much and they genuinely care about Nick. One of the most helpful people in this whole process has been a social worker here on the floor. She has been such a wonderful support for Nick and all of us. She has such a beautiful way of expressing things, a gentle way to ask questions and she actually listens to Nick and I when we talk to her about everything that has been going on. Thank goodness for kind and caring people who help you keep your footing on this path strewn with obstacles. I am tired and I must go. Since tomorrow is Monday, things will actually be happening at the hospital. I am so scared right now, words cannot express. This is a new level of terror.

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.” Carl Gustav Jung