When your in the in between


John Marandola-37

There is this place in cancer land that happens between MRIs, it’s the in between. Nothing is real, every possible symptom is the enemy. Can John John’s leg be “therapied” into cooperating again? Is his loss of bladder control because of a met in the spine or developmental? Is he ok? or is he not? The pound that he lost, was it all muscle? Is that what is causing this loss of control of his leg?

As a parent, we just don’t know the answer to these questions. These are the things that run through my head on a daily basis. These are the things I ask myself as I choose underwear or a pull up for my son to wear today. It’s very conflicting…I don’t know how to think anymore or how to act. I work myself into a state of worry only to go to an MRI and find out the cancer in his brain hasn’t spread any further. But, there’s no peace from this information because the Dr. presents the possibility of a tumor in his spine.

I watch my son drag his foot, and I have flashbacks about how this all began. His right foot began to turn inward toward his left foot. That was the first symptom of brain cancer. It was an observation that changed our lives.

I can not help but watch him drag his leg in horror, not knowing what is causing it.

I haven’t been able to pen my thoughts for a while now, because im so confused. I decided to take a mental break from cancer for a while, and try to reset my mind about the whole thing.

here’s what I came up with. John is still here, no one thought he would be. Yes, he is dragging his leg and wetting his pants. There is a possibility that things are worse than they appear. But, I’m not going to live in that reality right now. The reality I am going to choose to live in is, that John is a child struggling in a very real way right now with frontal lobe brain damage. That is more of a challenge than you may realize.

He is hard to keep emotionally stable. He melts down over the simplest things. My greatest victory this week was when I put green beans on his plate and the whole dinner did not dissolve into crying and thrashing about on the floor.

That is more real than the possibility of a tumor in his spine. That is to be categorized as a worry, but not put on the front burner of my mind. I have resolved to focus more on his day-to-day life and helping him to control his emotions.

I feel strongly that cancer will kill him eventually, I have prepared my other children for this. My husband and I are on opposite ends of this debate. He swears The Lord is going to heal my son. I have doubts.

We are in the in between, where nothing defines reality more than your thoughts. We try to be kind to each other and deal with the problems at hand. But, the in between is a very vast landscape that includes doubts and fears.

John is happy, Hope is happy. We’re going to stay right there while we’re in the in between.

With love,

Faith

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4 thoughts on “When your in the in between

  1. I lost a sister to cancer who was treated by traditional methods. Since then I have done hours of research on the history of medicine and alternative cancer treatments. I believe there are several alternative cancer treatments that work, but they are not endorsed by regular cancer doctors who can get in big trouble if they break away from the chemo, radiation, and surgery protocols. Any doctor who dares to question the standard protocols will be labeled a quack and his license to practice medicine will be threatened.

  2. Faith….You are a very talented writer. When I read your posts, I can feel your frustration, fear, and doubt. Your world has been turned upside down, and you are able to make me feeI what it is like to live a day in your shoes. I don’t know how you do it, but you are obviously an extremely strong woman and a loving mother.

    You wonder whether you are doing the “right” thing for your son, but sometimes the only right answer is what you feel in your heart is right for your child. The brain tumor didn’t grow in size, and that is a positive sign. I pray there will continue to be more positive signs and that his new symptoms improve. People you don’t even know are praying for your family, and I hope that somehow you can feel that. I know every time I see a firetruck, or pass a firehouse, I pray for your son. I love the picture of him in front of the firetruck. He has an infectious smile! What a beautiful gift to share with the world!

    • Believe it or not, I find the most difficult aspect of dealing with the brain tumor issue as a Christian is all the talk of healing. While I certainly believe that God CAN heal and miracles DO happen, I know that sometimes God says no. I wrestle with mind set a lot. Many people have “claimed” healing for my son, and it sends my mind into a tailspin of not knowing how to set my expectations. For a while I stood firmly on these claims. People seemed to believe so strongly that God WOULD heal my son as though it was a given. Then we got that call no one wants to get. The cancer had spread further into his brain. I began to withdrawl from people at that point and pour myself more into individual devotional time. I just couldn’t hear another person tell me that God was healing my sons cancer when I knew it had already spread. I shared tears with many people over this. I confessed my disbelief and anger. I thought it was a matter of not having enough Faith in Gods ability to heal him. That blame rested squarely on my shoulders. I realized that I was not God and therefore could not cause a certain outcome. I still have to politely make room for others beliefs while setting a boundary that I am not required to share their views on healing. Another thing that I wrestle with is prayer. It is very comforting knowing that so many people are praying for my son. But, I want them to pray for so much more than his healing. There is the brain damage, the setbacks, the day to day anxiety over symptoms, the perpetual limbo we live in, the difficult conversations I must have with my other children, the fact that we grieve the loss of expectation of a full and whole life for our child, the fact that this is very hard on our marriage, the fact that community all but disappears after the initial shock of the news (with the exception of a core group of friends)…there is so much more that is broken here and needs prayer. People tend to focus on John and not know or understand the rest of what we go through, which is why I blog the way I do and choose the subjects I choose. People must know that a persons heart can be broken into a million pieces over and over again, but still have Faith that God cares and loves them through their pain. That is a huge lesson I have learned in this situation.

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