November 24, 2014

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Consolidation Day 56: (Last day!). Unprepared

I don’t think that anyone is ever prepared to have a child with cancer. But I wanted to believe that I would be a little less disorganized, less unprepared, less caught off guard. I naively believed that my one pediatric oncology rotation in school would give me a better understanding of this process. During that rotation, I saw the children, spoke with the parents, listened to the oncologists. I studied the medications and the protocols. But you look through a different lens when it is YOUR child.

I was not prepared for the reality of having a child with cancer. How can you be prepared to pick up a prescription for morphine for your two year old? To watch as someone else’s blood drips into her veins? To look into her eyes as a six inch needle goes into her spine? How can you prepare yourself to explain to a four year old what cancer is and why it was YOUR sister that got sick? How do you prepare yourself to look into your husband’s eyes and tell him that his daughter has cancer? To tell your parents that their daughter’s daughter has cancer? You can never be prepared to say bedtime prayers and hear your baby say “can we say an extra prayer for me mama? Because I am sick?”

There is no school in life that can teach you about all of the emotions that come with cancer. The heartbreak that comes with that C word. The absolute terror of statistics. The dread of appointments and results. The exhaustion of sleepless nights, early morning appointments, late night meds and just plain worry. The constant stomachache from being so scared you are sick. These are the things that no book, doctor or website can prepare you for.

You can never be prepared to be five parents in one body. Labs must be done, appointments must be made on specific days, children must get to school, parents must get to work. You can’t prepare your body to be doing a hundred different things at the same time without getting worn out. You can’t prepare your mind to concentrate on one thing when it wants to think about another. And you can’t control your temper not to get mad when treatment and life don’t correspond in your calendar of events.

You also can’t ever prepare yourself for the support and love that will shower you through these times. Gifts will be given that you will never be able to thank people for. Time will be donated that you will never be able to compensate. And kind words will be said that you will never be able to return.

Ultimately, I have been especially unprepared for the loss of control. I can’t control the events of today – the appointments, work, Scarlett’s mood, the test results. I can’t control the events of tomorrow – the possibility of spending Christmas in the hospital, the effect of us being gone on Tate’s school day, the need to accept help. And, scariest of all, I cannot control the long term – the effects of radiation on Scarlett’s personality and learning abilities, the way that Tate and Evangeline grow up and deal with their emotions and fears, Scarlett’s recovery, relapse and survival.

These are the things that no amount of school, no books, no friends of friends, support groups or websites can prepare you for. Not a single day goes by that can prepare you for what is to come.

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