07/09/2025
Oh, how I vividly remember the last 2 weeks of Remi's life... especially the 3 days leading up to her passing. The complex PTSD that a DIPG/DMG journey takes you on AND leaves you with is..... honestly indescribable. My heart aches for Viv and her family. It's not fair that these kids have to suffer and struggle..... for the outcome to be death. All of these children have so much life that deserved to be lived. Please send extra strength to Viv's family as the anticipatory grief on top of watching your child slowly die at the end of a journey can feel like death itself for you as well.
The Pain No One Talks About
It’s devastating enough to be told your child is going to die. But living each day with that knowledge. Loving them while wondering when, is a pain few can truly understand. You dread the days ahead. You count each day they're still with you, and in the same breath, you're painfully aware you're also counting down the days left. But what no one prepares you for... is this.
I haven’t lost my child yet. And while I can only imagine the pain that moment will bring, these days leading up to it, the slow, agonizing lead-up, are something no one talks about. And I get it. No one wants to share this part. I never wanted you to remember Viv this way. I don’t want these images of her to live in your minds.
But the truth is, the bad is here. And it's unimaginably hard. “Hard” doesn’t even begin to describe it.
This past week hasn’t been filled much with laughter, movies, or playful distractions. It’s been the opposite.
The hard part isn't just watching your child throw up, it's having to hold her head while she does, because she doesn’t even have the strength to do that on her own. Or when she can’t tell you it’s coming, and the vomit goes alllll over you! It’s not just seeing her too weak to run and play, it’s having to carry her to the bathroom because her legs can’t support her. The hard part isn’t watching her struggle to eat, it’s having to feed her tiny pieces to make sure she doesn’t choke. It’s not just listening carefully to understand what she’s struggling to say, it’s hearing her scream through tears that she’d rather be dead.
I’ll spear you those awful images, but think snout it…. However, I’ll share the most recent one of her sleeping, after begging to go to sleep after all the vomiting and not even wanting to shower (of course I showered her and then put her straight in bed)
No one warns you about these moments. These are the realities of DIPG. Not just death, but suffering so deep, so relentless, it steals away even the smallest dignity from a child. And yet… our lawmakers remain silent.
If only they saw this. If only they witnessed ONE day in this hell. They’d understand why we need funding, why we need research, why we need a cure!!! Billions are sent to aid causes across the world, but we can’t even protect our own children?
This is beyond brutal.
People think they understand the pain of losing a child. But this, watching your child suffer, begging God to take it from them and give it to you instead, is a pain no words can capture. It's not just grief. It’s helplessness. It’s torment. It’s rage!
Out of everything we’ve shared on Team Viv… I hope this one reaches the hearts that can make a difference. No parent should feel this pain, but more than that, NO CHILD should have to live it.
Please…..share this! Call your lawmakers. Tell them to listen. Tell them to act. This can happen to anyone’s child. But together, we do have the power to change the outcome.
Let’s fight for the children still here. Let’s fight in honor of the ones we’ve lost. Let’s make this stop.
I so desperately need my daughter!!!
