headshot-Looking-right-stairs-smallerThis post has been running around in my head for a while now. Buckle up. Some of you may not like it much. It’s not really an update on John because there’s nothing to update at present. His cancer is growing – aggressively – and we’re still waiting to see if we can get him into the National Cancer Institute program. At this point, the tumors in his abdomen could keep him out of the trial. As his doctor said last week, “What you really need is less cancer.”

Ya’ think?

Today, I want to share with everyone who reads this blog the reasons why I write it (and clear up some misconceptions about that). It’s not just because it’s an easy way to update a lot of people about how our cancer journey is going (even though it is). It goes much deeper than that for me.

I write, first and foremost, because it’s cathartic for me to get my feeling out “on paper.” I’ve been a writer my whole life. I communicate best in writing and often the things I end up writing about don’t even dawn on me until they’re written down. So, when something changes with John, for better or for worse, the first thing I want to do is write about it.

I write because I believe it truly helps others to read about our struggles and how we’re handling them. I’m in the business of supporting others to change their lives. I know (because I’ve been told dozens of times) that our story is touching (and changing) lives. Here’s part of a Facebook message I got after my last post…

“Know that this family of 6 speaks of John and Julie and your family daily. Love trumps cancer. It is spoken around our dinner table. Just wanted you to know people are praying for you guys. To love so fully is a gift you are giving to us all. My 19 year old daughter reads these post too and she said to me the other day, ‘This is what love looks like.’ Pretty powerful. God Bless.”

Powerful and humbling indeed.

Finally, I write because it’s a record of this huge, horrible, scary, intense, mysterious journey we’re on. And as weird as it may seem, I want to remember all of it. Even now, when I go back and read posts from the beginning, it reminds me of where we’ve been and how far we’ve come (whether or not that’s a good thing because, trust me, I’d much rather we had “arrived” somewhere other than where we are now). Someday, when this is all over and (hopefully) we have a happy ending, my plan is to turn this blog into a book. Particularly since it’s written from a caregiver’s perspective, I think it would be a valuable contribution to the world.

So, that’s why I write. Now I need to clear a few things up, because I’ve gotten some questions and criticism that I’d like to address.

First, I don’t ever share anything John’s not comfortable with and I got his full blessing before I ever wrote a single word about his journey.

I don’t write this blog because I’m looking for attention or sympathy. Ever. Believe me, I’d love it if I never had to write another post on this topic, never had to talk about it or answer the question, “How’s John?” again.

I’ll warn you now, some of you may not like this last part, but it’s been stealing energy from me and I need to say it.

I don’t write this blog to glorify God. Not yours or mine or anyone’s.

If that offends you (and apparently it does because I’ve actually been told that God’s not happy with the way I’m sharing our story and that He wants me to give Him more recognition and write about Him more), I’m sorry.

Please understand. I am a deeply spiritual person. I am also intensely private about that part of my life. I don’t discuss it with very many people, even those closest to me. That being said, it warms my heart to have literally thousands of people praying for us. I’ll take prayers from anyone and everyone. Even if you don’t call it praying. If you’re sending positive energy out to us in any way, I believe it helps and I truly feel lifted up when I know there are so many people, most of whom don’t even know us, doing that.

But when those prayers come attached to advice or assumptions about my own faith or spirituality, they have the opposite effect. When people tell me that everything that’s happening is “God’s will” and that it’s His way of making me trust and rely on Him, it affects me deeply, but probably not in the way they intend it to.

When they tell me what I need to do to somehow garnish God’s favor, or admonish me to simply “give it to God because He’s got this,” or imply that if I just have enough faith I’ll be fine, it makes me want to scream. And worse, it makes me feel like it’s not okay to feel the way I do.

I’m not gonna lie, the past few years have certainly tested my faith. There are days when I rage at God for letting this happen to John, when I’m so angry I can’t even begin to think about handing anything over to Him. But that’s between me and God. And it’s no one else’s business.

I’m not here to challenge anyone’s beliefs. I respect everyone’s right to believe whatever they choose. I know it’s passion and the desire to help that leads some to share those beliefs in a way that they think will help. If you’re one of those people, I need you to know that it doesn’t help me. On the contrary. It feels like I’m being judged and it can make a bad day worse.

Thanks for listening and please, please, PLEASE take this in the spirit in which I’m offering it. Not judging you at all for what you believe, just asking for what I need (and don’t need) right now. Prayers and positive thoughts and messages sent our way have, do, and will continue to bless us beyond belief. Just please don’t offer them along with any strings attached.

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