10 Years Of Tonia Says - Tonia's Last Blog Post Idea

This week’s posts contain difficult themes and language. Please read with care.

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Tonia’s last blog post idea was in response to medical professionals who – after giving her a terminal diagnosis – told her to “have hope and hold on for others.” She felt this was harmful and wished to explore it in a blog post. 

While we were not able to address this topic in the fierce, tender and nuanced way that Tonia would have, we hope she would appreciate our efforts.

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[Image: A white child with brown hair – Tonia – sits in a child-sized rocking chair while talking on a rotary phone. She is wearing a red sweatshirt, blue jeans and white socks and tennis shoes.]

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Tonia, 

Let me start with reminding you how incredibly proud I am of you for your strength and how hard you fought through the last year of your life. 

You did not have to do that, but you did –and you did it for yourself and for us. I know that must have been such a scary and difficult choice for you to make even when all you wanted was more time. (We had a whole extra year with you. That’s a lot of days!) 

Now– I'm so sorry the medical professionals who should have been there for comfort and support during the hardest part of your life invalidated your feelings and made you feel like you had to hold out hope when reality was what it was. 

The truth is? You were hopeful. Choosing help was hope. Making those difficult choices for the last year was your way of holding on for us. Accepting the reality of your prognosis did not make you any less and there is strength in facing an impossible reality and calling it what it is. 

You did absolutely everything right, no matter the outcome.

Love, 

Alyssa

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Dear Tonia,

Let’s be honest - that’s bullsh-t. The thing about terminal illness is that there is no hope anymore. Not like people mean when they say that. Not hope for a cure or recovery or magical healing. You were going to die. It couldn’t be stopped or even postponed all that much by that point. 

It’s a weird and scary thing to come to terms with, and I know you spent a lot of time trying to do just that - grapple with the fact that you were dying much, much sooner than you wanted to. That you were dying without accomplishing all of the things you wanted to. That you were leaving behind people you loved and a life that you had worked hard to build that felt as good and sweet and safe as you could make it. 

Dying sucks. You didn’t want to die. But you were. And you knew it. And people telling you to “have hope and hold on” were just trying to avoid facing that truth themselves, because no one likes to look at death. 

As for holding on for others, well, sh-t. First of all, it’s impossible to stop the progression of disease (because, hello, that’s not a process under conscious control). You would if you could - not for others, but for yourself. See aforementioned ‘did not want to die’ point.

But secondly and more importantly, you spent the majority of your life in service to others. Of all the things you get to do solely for yourself, how you want and need to, dying should be it. Can’t they let you die in peace without hauling out the parentification trauma on your goddamn deathbed?? 

We all know you would have stayed for us if you could have. You told us as much. In fact, you told us you’d be staying even after death - even those of us who don’t believe in that ;) 

You weren’t dying because you weren’t “holding on” hard enough. You were dying because you were sick. Even sick, you were holding onto life with everything you had, even when it was killing you. And my love, I am so grateful I had the chance to be there to give you permission to let go.

“So let me say before we part

So much of me

Is made of what I learned from you

You’ll be with me

Like a handprint on my heart

And now whatever way our stories end

I know you have rewritten mine

By being my friend”

Love always,

Emery

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My beautiful friend—

When people tell you to hang on for others,

I want to scream into a thousand pillows,

because don't they see?

Don't they see how hard you're fighting?

Don't they see how hard you fought

to be here and to stay here?

I want them to see what I see—

That you hung on from Day One,

when you came into this world before your tiny lungs were ready to breathe.

Through trauma after trauma, 

treatment after treatment,

You hung on.

I want them to read the note you left me and your sister,

March 22nd, 2022, 11:57 p.m.:

"Never doubt how hard I'm always willing to fight to be here with both of you."

I never doubted. 

And in the end,

when your body gave way,

I hope your great grandparents were there to greet your spirit—

To wrap their arms around you as you wheeled your way to what's next.

(Yes, wheeled—ableist tropes have no place in your Afterlife.)

I hope they told you that you did so good—so, so good.

I hope they told you that it was okay to let go, and that you are enough, 

and I hope they gathered up all the light and love you brought to our world

and surrounded you with all that you gave us.

My beautiful friend—

In the words of one of my favorite writers,

"If sheer force of will and love could keep a person here ..."

Tonia, if your will and your love could have done it,

You. Would. Have. Stayed.

And that's the thing about love ...

I feel you here still.

I feel you all around us. 

I hear you saying ...

Love did keep me here.

In your own words again (because oh, how I cherish your words)—

"A love like that doesn't stop just because a life does."

Love,

K

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Dear Tonia,

They say life isn’t fair, but death isn’t either. It isn’t fair that you had to go through so much pain. It isn’t fair that your wishes were not respected and at times not even asked about. God, it’s not fair that you didn’t get more time. 

Still, it’s beyond messed up that you were viewed as some sort of bizarre through line by these people who told you to hold on for others. As if living was somehow within your control. As if your pain was less important than what you could do for other people. 

Don’t get me wrong, Tonia, you lit up my life and cracked my world wide open. But if I had been fortunate enough to be at your bedside in those last few moments, I hope I would have found the strength to tell you something similar to what I told my grandma the last time I saw her before she died. 

I told her that we’d be okay, and I thanked her for everything. The first one is the truth (mostly. Depends on the day). The second part is woefully unspecific but meant with my whole heart. There’s no getting around the fact that death is hard for the loved ones that are left behind to make sense of a world without a person that they hold so dear. 

Even so, dying was the thing that was happening to you. You should not have been guilted about circumstances that were beyond your control. Those so-called professionals should not have put words in your sister’s mouth. It is toxic and harmful to say something like this to a dying person, no matter how well-meaning a person’s intentions may be. 

I’m sorry you never got to write a blog post about this because I know you would have knocked it out of the park like every other blog post, adding nuance to the topic that I can’t fully understand because it hasn’t been my experience. 

Can’t wait to read about it and all of the other blog posts and NaNos and everything else you’ve been up to whenever we meet again someday, though. 

Love,

Kayla

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Hi ❤

It’s been awhile since we’ve heard those words, but I’m still mad about them. 

It’s so far from how I felt. 

It was rude of medical professionals who didn’t even know us to assume that I would want or expect something impossible from you. And it was unspeakably insensitive of them to ask anything of you, honestly. 

This journey was yours to take alone, and I still ache at how lonely it may have felt for you. 

All we could do was show up however we were able and attempt to pour a lifetime’s worth of love, laughter, nighttime chats, hand squeezes, reading out loud, singing together, hugs and kisses into what time we had left to physically exist in the same space together.

You held me while I grieved. 

I held you while you grieved.

When you were scared, we thought of the safest place we knew. We decided that was where you would go.

Because it wasn’t about me. It was about us. It was about you. 

And while you would never be ready, it was about making it safe and comfortable and possible for you to die when the time came. 

I’ll never understand what that process was like for you. But I hope you felt centered in every single sacred moment.

I’m so very proud of you. 

Love,

Me (Tara)

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Thank you so much for helping remember and celebrate Tonia. Tune in next Monday for the final 10th anniversary post. 

Next week's prompt is: Everything I Know About Disability Pride, I Learned From Tonia /  Tonia Says. 😉

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 25th at 10 PM Central.