They’re in His Eyes
They’re what? I say.
The Dr. says to me as she examines my son’s eyes, ‘He has tumors in his eyes’.
I’d just finished telling the ophthalmologist that my mom was blind in one eye from the medical condition that I share with my son, but no one since then has eye tumors.
The first thing that goes through my mind is ‘oh god, why not me?’ I was checked just before him and I have the genetic disorder that means we are missing a tumor suppressor gene and we are at high risk to grow tumors in 10 places in our bodies. SO far we both have brain tumors; I have spinal tumors and one on my pancreas.
I am his mom, I’m sitting there with my pupils dilated and I miss the bullet and he gets two; one tumor in each eye.
How do we navigate through these tough times without being bowled over?
I want to start by saying: I think I have an amazing life. I am very blessed and I am committed to squeezing every bit of goodness out of each gooey day. But this is horrible and I’m not happy about how things go.
I don’t, however, hate this condition. You see it on social media F#$& cancer… when people have been impacted by a certain disease. This condition, for one thing, is on every strand of my DNA and my sons and I love every bit if his DNA and I’m learning to love mine. SO I can’t hate it.
Plus some of the tools I’ve learned to deal with that horribleness is so helpful when life lobs another bit if horribleness my way. And it might help you too. (Link to some journaling prompts that will help you navigate the ‘lemons.’)
Someone asked me how I do this without getting depressed.
I do feel down and I do feel sad, but I don’t let those feelings take over any more than I let joy or happiness rose color things.
First of all, I feel the feels, all of them
I feel soooooo guilty that it’s him and not me. I ‘feel’ guilty I hold that emotion a part from me. I feel it, logical or not. It a feeling and its worthy of time and space and I don’t over identify with it.
I tell someone how I feel
These people are those that I trust with my soul. That means they will hold the space I need to be me, whatever that looks like – me feeling guilty, sad, or laughing that my pupils still look like I did a line of coke… they love me and I trust them.
I try to stay in the moment
I live where my feet are. I can’t ‘future surf’ to what could happen. It could be good or bad and rarely if we feel overwhelmed do we go to the happiest of endings. SO I don’t go anywhere. I stay in that moment.
I tell myself the truth
And I am as accurate as possible. I had Josh not knowing that I carried a dominant gene which meant I had a 50% chance of ‘giving’ it to my kids and that we have a 90% chance of developing tumors and cancer in a wide variety of places in our bodies.
When stuff like this happens, I feel guilty because my reactive, protective mom brain goes to beat me up and says “I gave this to him’ and it literally takes my breath away.
The TRUTH is I didn’t ‘give’ him anything. I catch myself and I say to myself, with kindness, ‘it was passed onto him and it’s not your fault’. I keep going back to that truth when my brain tells me that any of this is my responsibility.
I try to find one thing to be grateful for
And usually, I find way more than one. My big beloved son is such a Rock, he takes things in stride, he is infinitely brave, always so beautifully kind and he has a kick ass sense of humor even in these situations. AND we have an amazing Dr. who started his first treatment that day; delaying others to make Josh a priority – she’s amazing.
And the piece de resistance is.
I don’t fight it
I do not fight my tumors or his…I don’t like that we have them, I’m so disappointed and at times devastated by his, especially. But I cannot put on the boxing gloves and battle with this. I will always lose.
So I surrender
That’s my greatest peace provider. So this ‘is’ and I cannot do anything to change it but I can give in and walk alongside this stuff, incorporate it into my life and take it along for the ride. The less I fight it the smaller it becomes and the more I focus on all the other fullness in life, the less I worry about it.
The not fighting, rather letting it informs me of how I want to live, the more content I become.
I also learn the lessons
We, ok I, complain about things, my wrinkles, my cellulite and when things like this happen I DO NOT CARE! If my income is less one month, my dishwasher breaks.
Whatever. I take it in greater stride. I am healthy, can see and run and work and do so many things that many can’t and I want to soak in gratitude for the grace that has been lathered on me and given to so many.
And finally, when things get hard I make a mental list of what I can control and what I can’t.
I have a saying that helps me let go of the gritty prices on the “can’t control’ side which usually sound like “I’ll have everything I need” Which I don’t always know what that looks like and bad things have definitely happened, but I have always made it and I continue to trust that.
Then I turn my attention to what I can control
That list is usually longer than I think and more simple than one might imagine.
The ‘I can control’ list usually starts with me being more present, really being with the people I love, I become more spiritual, I joyfully exercise, and I become more intentional overall.
Surprisingly I experience the most exquisite joy spots, because life, even the hard parts, is so rich in meaning and gifts I am most often in awe by the goodness I’ve been given.
This part of the journey is just begun, but I hold onto hope that we can navigate this with grace, trust, and wisdom, that always accompanies us. I just need to remember.
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