Privacy concerns.

I have a post that I can’t finish. Part of the reason is that I don’t know what else to say, but I know it is not complete. It just hangs there with more to be said and no words worth saying. But more than that, I feel like it seeps into a part of Beaudin’s personal story in that slow oozey way that I am not sure it is entirely mine to share. It’s about things more private than just accessing a port, or receiving a chemotherapy.

A friend of mine has a daughter who was born with a rare condition that has had her in and out of the hospital all her life. She is a bit younger than Beau and has spent many more hours in the waiting room at various children’s hospitals, seeing different specialists, in the OR, recovering from yet another reconstructive surgery. I couldn’t tell you that much more about her condition. Both because it is super rare, but moreso because my friend doesn’t share about it, almost ever. And when she does, she keeps it quite high-level.

I’ve spoken with her on a couple of occasions about her approach, why she doesn’t share the details, and she has explained her conviction that it is her daughter’s story to tell, not hers. And I nod my head in agreement. You see, her condition involves the bowels and other parts of the body that are more “private” and so it feels like more of a violation of the daughter’s privacy to detail them for public consumption. And because I love my friend, and her daughter, I nod in affirmation that she doesn’t share much. But secretly I wish she did.

She is a strong mom. A mom who has been through so much in regards to her child’s health and still shows up every damn day with a “let’s make it happen” attitude. And yes, her daughter has been through a lot too, but I am not hoping for the daughter’s story, I am hoping for the mom’s roadmap. How did you navigate this all? How did you keep your head up after the umpteenth time your daughter’s body went limp with anesthesia? How do you keep encouraging her that she is healthy, and strong, and brave, when you aren’t sure this will ever end? How did you come to peace with all of this? How do you show up day after day with that smile?

As time has passed she has shared bits and pieces of this roadmap. And if you listen to her closely enough, follow along on her instagram (which is not child’s health related) you can gather how she does it, how she is raising her daughter with confidence, strength, and bravery. But I guess, knowing her, knowing me, knowing the trauma of being a mama who watches their child suffer, I want more….for myself. I would listen to every single word she wrote, I would read it back to myself over and over again, were she to document each little step of bravery that has led her to this side of the valley.

When Beaudin was diagnosed I didn’t think much about whether or not it was appropriate and honoring of “his story” to write on Caring Bridge or my blog. It was my life blood, like oxygen actually being carried through my body, to put pen to paper (or in my case, fingers to keyboard). I didn’t feel like I was sharing anything too violating about him in the process, or anything that would cause me regret later as he came of age to read my work. If anything, I was sure that he would appreciate, or perhaps his future wife would appreciate, the details of what Leukemia had looked like for him.

There were a couple moments that I didn’t write down. Moments that haunt me in a menacing way, creeping in to my thoughts every now and again. Like true trauma, I think that they are dead and buried and then something seemingly inconsequential causes them to reactivate their vicious death grip on me.

The blog post I can’t finish details the appointment we had last month and the sour taste that was left in my mouth as we left. Writing it out was healing, to acknowledge how fucked up this whole cancer thing can be. Writing it out also resurfaced some memories that I was sure were dead and gone.

Like the time when they tested him for various STD’s and AIDS. This was back before the cancer diagnosis, in the month leading up to it when chronic immune suppression was the only rabbit trail to follow. Unable to figure out what could be wrong with him, they were asking about everything under the sun.

“Has Beaudin every been sexually abused?”

“No! Nope. Absolutely not.” I replied as soon as the words had left their mouth, and just as quickly wondered if I even knew what I was saying. “I mean,” I took a deep breath, “I don’t think so, not that I know of…” I added in a whisper.

Because at the time he was only 6 years old (perhaps too young to voice sexual assault) and because there were no other obvious causes for his ill health, they tested him for all the things.

“Beau do you remember the tests they did that time they had to replace your IV? A long time ago, when we were at the hospital at Christmas?”

“No…When I had cancer?”

“No, this was right before cancer… In that room, down the hall on Floor 8, you know, the room with the weird sea creature paintings, the orca that was pink. That room?”

“No, I don’t know about a pink orca.”

“Oh. O.K….. The day they replaced your IV? They did that other test, you don’t remember it, the other test?” I was fishing, sure the trauma was a suppressed the memory, desperate to surface it, to at least find some proof it was there.

“No, pretty sure I wouldn’t have let them replace my IV, Mom! That would have been terrible. I’d just have told them to use my port!”

Sweet boy, this was before the port.

Perhaps I am the only one with the memory. The team of nurses holding him down while he writhed about and screamed that no one was supposed to touch him there. The way he screamed, “Dad, SAVE MEEEEEE!” The tears that slowly fell down Josh’s cheeks. The way Beau wept silently as they wheeled the bed back to his room. Did I hold that trauma for both of us? Or had he been spared of the memory and the only trauma to be held was my own.

“Right. Your port,” I took the detour. “Aren’t you so thankful for your port and not having to get IV’s any more?!?”

“My port is the best part about cancer. Mom, I don’t think they should have a pink orca. Orca’s are black, or maybe dark blue, but they aren’t pink. Ever. That’s just dumb.”

“You’re right Beau. This is dumb.”

Where does Beaudin’s story end and mine begin? How does the trauma developed from watching your child experience trauma differ from the trauma developed from being the child experiencing it? I’d love to believe it was as simple as a line in the sand. Betsy, you can write up to and including this part, but at that moment, the story is his.

It is never that clear. Trauma is never that clear. Healing is never that clear.

I’ll keep doing the work to unwind the trauma of watching my child experience trauma and that will keep including pen on paper. I hope that the words I choose to keep are the ones that illuminate his strength, our bravery, and someday, they allow him all the space he needs to make this story his own.


7 thoughts on “Privacy concerns.”

  1. What a beautifully honest post, Betsy!… But what else what I expect from you, my friend. ❤️

    And now moms, across the country, sitting for hours and hours in a hospital waiting room,,… Are reading your posts; A beautiful and messy road map!


  2. Oh Betsy… So beautiful and important and heartbreaking. It stirs up all the ghost memories in my mind and heart of watching my guy go through the trauma. What do I do for him? What do I do for me? Sending love and gratitude.


    1. Thank you for reading Jennifer. The questions you ask are exactly where we should start, seeking healing, lifting secrecy and shame, keeping those questions in front of us. Love to you and your son ❤️❤️❤️


  3. Oh friend. I still don’t know how to answer this. I still don’t know how to share my story and leave hers to her. I want to, I’m irrevocably changed, I know it could help, but it scares me too. It’s all so ugly and hard. Thank you for sharing your voice in a space that’s dark and lonely. I wish more of us could/would.


    1. I love you friend and am glad to get to witness your story even if you don’t write me the word for word roadmap I think I need. Seeing you parent her is a blessing in disguise for this long, hard road. Much love to you. Always ❤️❤️


  4. This is a really interesting perspective! As a young adult survivor, my experience is definitely different than watching your child experience these things. My heart goes out to you.


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