Everything Has Become Weirdly Normal


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Hi there, I know most of you who read about my son John John don’t have a face to put to the author. So, here I am. Faith

It’s been a quiet season of contemplation lately around here. School for our son is a dream of mine realized. I never thought I would have the luxury of struggling to let him go. Every doctor told us he would never be here this long. But, you have been coming here for a while, you already know this. May 29th, 2013 is a day I will not soon forget. Today marks 2 years and 6 months since John John was diagnosed with anaplastic ganglioglioma a.k.a. aggressive stage 4 terminal brain cancer with no treatment. He was given 3-9 months to live. I never thought that I would be able to take a photo of myself smiling this week, if you had asked me 2 years and 6 months ago………But, look……we are all still here. And, everyone is ok.

I freak people out, I noticed. I have gone so up and down with every mri over the last couple of years, and yes, we have metastasis of his cancer. But, its been dormant for a year. That is not what freaks people out. It’s the part where I talk frankly about my son’s medical condition as though I have become detached. No, I’m not detached. I do have emotions. But, I realized somewhere along the way that I am not called to walk in fear. That roller coaster left the station. (it’s a long story, I got a wake up call from some “friends”)

Look. It is what it is. We embrace life, and recently, normalcy. Somewhere along the way, I realized I did not have to stay on this roller coaster all the time. I emailed his oncologist last month and asked her what the plan was. It had been 4 or 5 months since I heard from her. She said at the 6 month mark (since the last mri), he needs an mri to just check and make sure we know where he’s at.

The Dr. just kinda throws her hands in the air….she is no help in setting expectations. We are trained monkeys, we simply wait for the next mri. Well, in the last 6 months we have become so normal. It is weird. After all, John John is doing well. Hope is doing well. Steve and I are doing normal too.

So, when I received the email from the oncologist with the request that we schedule an mri for November, I paused. Wait, how am I going to do this?? Am I going to board the roller coaster of emotion again? I am invested. But, I know I do not have to be invested in a freaking out kinda way. Should I wait until Jan instead of Nov so we can do what we did last year? Get in ONE LAST Christmas? That was a horrific wait. Christmas was drama filled and the anticipation climbed to a scary level. I became panic-stricken and scared as hell. I don’t want to do that again.

I really began to think about the last couple of years. We were told terminal brain cancer. 3-9 months. Go. Live out John John’s last days. Take a Make a Wish Trip. Then he will die.

That is the reality of my mindset since May 29th, 2013. Freak out mode. Take that set of facts and run with it. That is what cancer gave to us. I think I went about it gracefully for about the first year, then I started to go nuts. When mom goes nuts, the whole world is nuts. Seriously nuts. But, the hard “facts” were very ugly. I never knew facts could be subjective. Seems contradictory.

I don’t think any parent can really wrap their brains around terminally ill when it comes to their children. That is like imminent death, right? Apparently not. I am not unhappy that the Dr.s were wrong. I’m actually 100% thrilled about that. What I am not happy with is the fear these subjective “facts” lead life to look like. I think I finally hit a breaking point. I am not angry at God anymore. My fall from gracefully handling this situation has passed. I feel like the more I think about things I know the end of our son is not near. What is terminal anyway? Aren’t we ALL terminal upon birth??

It took on meaning and I gave it power because it is my son. John John is a deeply imbedded part of my life that will never not be part of me. We place proper value on life and when we hear “facts” about the fact that this beautiful wonderfully made baby God gave us will imminently die, we don’t know how to handle that. Especially when the situation seems to linger, you count the days, the months, the years, and then wonder…Why am I still counting?????????????

Well, I won’t commit to not counting my blessings day by day. But, I think the context has changed.

Yes, terminal brain cancer, death, physical decline, therapy, IEP, struggle, and fight are all part of what makes John John himself….so are happy, energetic, healthy (aside from cancer), funny, smart, imaginative, a bit spoiled, sweet, loving, gift from God.

You see, I guess what I am trying to say is, the context is no longer black and white. It is somewhere in the grey. Ironic, grey. Grey matter, that comprises the brain. I can be every level of freaked out and it does not change the situation. I think acceptance has finally come to me. I have no answers, only God does. I don’t have the road map. Surrender, white flag going up…… I don’t have to take the scary fast roller coaster to get there. I can walk, jog, at my own pace.

It is what it is. And, I am alright with that. So, tomorrow I will call and make the appointment for November for John John’s next mri. And, I will put it away for now. He is happy. And every other wonderful descriptive word I can come up with to describe my son.

Was I just rambling or did that make sense? You tell me,

Faith

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2 thoughts on “Everything Has Become Weirdly Normal

    • I love you too! Look, its all in the expectations you choose to accept. God’s or Dr’s……in retrospect, I was wrong from the beginning. I hinged God on man’s word. I was backward. We have to keep Dr.s in their place. They are not God. My faith only waivered because I placed my expectations on Dr.s, not God……..We can all do math here!

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