It all seems surreal. I've blogged about it on Caring Bridge and Jace's Facebook page for almost that long. I always hope to be able to give people a small honest glimpse into our lives now.
One day I'll go back and read and compile it all. One day . . .
My updates are fewer and farther between these days. It seems that I have less and less to say.
Actually, I have a lot (A LOT) going on in my head almost 24 hours a day, but I'm finding more and more that I'm not willing to share that with many.
Jace is doing well on his treatment. And that IS a victory. We ARE so thankful.
However, because he "seems fine" to everyone else, it's easy for them to think that we have no worries or stresses and life should be "business as usual" now.
Any cancer family will tell you, "Doctors have NEVER said there is a 100% cure rate." (leukemia is 85%) Let that sink in for a bit. Jace is doing well, but we are still on this journey and at any moment we know life could change again. As a parent who has watched their child go through things even adults haven't experienced, that 15% is always just over our shoulder. Borrow trouble from tomorrow you say? Well, keep reading, I cover comments like that below.
It's very difficult to explain. I'm only speaking for our family, so I am not sure if it's just us or if others feel the same way.
The longer we are on this journey the further away everyone else seems.
I've watched people walk in these shoes prior and noticed that same "withdrawl" for lack of a better word. I always wondered about it and wished that I could just make it all better for them. Now, I know, it's not that simple.
Jason and I have our small circle of friends who we confide in and who are credited with keeping us "afloat" in the ocean we are in at the moment. But to be honest, those I trusted before and confided in have proven not to be as trustworthy or "on our side" as we first thought. And then that creates lack of trust with almost everyone.
As things around us change, (jobs, relationships, circumstances) we continue to struggle with what my friend and fellow cancer mom, Candi, calls the "behind the scenes."
It's all of the things other people just can't know.
At first I thought I'd try to write it all out, but I found that the photo I created says it best. There are many, many, many things deep below the surface of what everyone else knows or sees of us. These are things you most likely won't hear us talking about, but every.single.day all of us are struggling through at least one of them and usually more than one at a time.
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^ ^ ^ See that bottom part? That's the valley we are in now. That's the place I'm writing you from. That's the place that most families are truly living.
One of the biggest things I, personally, struggle with is learning to disregard feedback from others. I know many of my fellow warrior moms and many of the warrior women who have struggled the cancer journey will understand this. We know those that say things, typically, mean well, but their comments are not usually helpful.
Many "spectators" seem to have judgements and opinions swirling around all the time:
(these are not all my experiences, but some I've heard along the way)
*They had another baby?!
*If they can't completely do their job and take care of their treatment, then they don't need to be working.
*Why do they have to pick up their child if someone in the class has fever? What's the big deal? They were already exposed!
*How dare they spend money on anything else except insurance or medical bills!
*Why is she not the friend she was before?
*They are fine. Leukemia has an 85% cure rate. I know tons of people who had leukemia and are now adults.
*Well, at least you get to quit your job and be a stay at home mom now. I'm so jealous.
*Isn't his treatment over yet? How much longer?!
Here's the bottom line and author Brene Brown has no idea of the power of this statement but for me this is my response to all of THOSE comments:
If you've never watched your child battle cancer....
If you've never been in THIS arena....
If you're not getting your ass kicked by this journey, your feedback is not needed.
Our family, childhood cancer families, all cancer families - they need love, understanding, patience, support, and prayers in a feedback free zone.
Continue to keep it real, my sweet friend. You know it's not just you. By being the T you always were at your core (and you still are/always will be because your circumstances don't change that), you are being helpful. And we both know that when you're feeling helpless, helping others helps.
ReplyDeleteI'm sorry that other's perception is so painful for you all. Just remember that it's only that - perception. As you say, they cannot know or understand unless they've been there. What's really happening is they're projecting their fears and what they think THEY would feel/say/do onto your situation. You understand they mean well but understand they're afraid. And fear makes us do the self-protect thing... Which rarely feels loving.
I love you. Even though I am only on the peripheral of your journey, you have taught me so much about faith, family, and parenthood. Keep doing what you're doing.
I'm here if you need another night out. Maybe we can invite Harry along, too. :)