Inside the mind of a parent with a child living with brain cancer

Whew, I couldn’t find a more twisted subject to dive into tonight. I have a lot on my mind. Tomorrow we see the oncologist. It’s all fear really, the oncologist has magical powers to crush my world or give me more time. And, what time is it? Time for another mri. We seem to live from mri to mri.


Is it back, is it not? is it back, is it not? is it back, is it not? 100 times a day i ask myself if the brain cancer is back. Or maybe not. Maybe it is just the very real possibility of brain damage manifest. It’s such a fine line to walk. Like I mentioned before, it’s a tightrope walk of where to invest emotion. Maybe I sound like a broken record player these days. But, inside my mind this is how it goes.

I enjoy and revel in the diamonds of activity and special moments with my family. We focus a lot on the kids. The people who have come into our lives are amazing. I fully invest myself into those moments when they happen.

Late at night I write and cry. I let it all loose. Its simply too much to hold in. Tears spilling out is cathartic more than anything else I know. Do I let my mind go THERE? To the place of what ifs? of course I do. what if he dies? What if he lives? I imagine both in vivid detail, and heavily investing in both.

On the side of dying, I savor every moment and try my hardest to create opportunity for good memories and tons of photos. I am tender and sweet as much as I am capable. I try to temper my inability to cope with space, not with anger or sadness. I try so hard to just be present in every moment possible. It is not easy.

On the side of life, I invest great amounts of time in physical and occupational therapy. In hopes that if he lives, he will have the very best in healing he could have. I give him grace when he is tired, try hard to encourage him to rest. But, I push him when I think he can do better. I try to train him to overcome the symptoms of frontal lobe brain damage. the yelling, the impulsiveness, the behavior issues, the pure selfishness that his situation enables. It is not easy.

I think a lot about where were at right now, in this moment. I center my thoughts situation by situation through the day, days, weeks, months. Where we were compared to where we are now. I compare and measure gains and losses carefully, trying to predict what direction we are going. All the well knowing I have no control over anything….All I can do, is what i am doing. It’s hard to think about.

I carefully cull out time to be sane and normal for my families sake. Some see it as selfish, i’m sure. But, I’m not defensive. I’m realistic. It would be very easy to burn out under all this stress. I lost half my hair. I had to cut it off. I gained 20 lbs after I lost 35. I don’t sleep well. I have nightmares. I have to cull out time for my well being so I don’t burn out. Because, if I do. What good am I one way or another?

My friendships are distant (except a few), and worry is everywhere. I’ll take this time to drop a bit of a bombshell. I have a lump in my neck. It’s about two inches by one inch. I have known about it for some time. Its time to get that figured out. It is causing jaw pain and throat pain. Making swallowing difficult. I am scared to death. At a certain point, you realize that ignoring reality doesn’t change it. It’s a hard pill to swallow. I pray its nothing big. No real worry, just a scare. But who in my position could think it was anything small? It scares the absolute hell out of me. Im so busy right now, the last thing I need is to have to worry about myself.

How useless is worry anyway? why worry. just ignore it, right? that’s what i said to myself for the last two years I knew the lump was there. but, pain makes it more poignant. more real. worrying IS useless. action is for the benefit of all in every situation with much prayer and thought. Yours is appreciated very much.

Love, Faith


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