The Sound of Survival

As my muscles weaken and I spend more time on my ventilator, my voice is fading as well. After much frustration trying to gather enough breath to make myself heard, especially from another room, we came up with a new solution.

I was delighted that with my new amplifier I can easily be heard, even in my softest voice. It saves me a lot of breath, and makes it easier for the people around to understand me.

However, this didn’t necessarily go over well with everyone. When my young son saw the demonstration of my new device his eyes widened. “Please do not EVER use that in front of any of my friends.” Ahh, I’ve seen this hard embarrassment before. It happened when I initially needed a machine to support my breathing, and it happened when I first started using a wheelchair. Whenever we were headed somewhere, he would ask, “are you bringing your vent? Are you bringing your chair?” Earlier on I was able to provide some balance- leaving these behind to make it through short events with him so that he had one less thing to worry over. As my condition has progressed however, these helps are a more constant companion. But here we are with a new player on the scene, and my heart breaks for my boy who just longs for some normalcy.

And so I find myself holding two truths at once. I am deeply grateful for tools that allow me to remain present, to speak, to be heard, to stay connected to the people I love. And I am also grieving alongside my son, who did not ask for a mother whose body requires so much explaining.

His embarrassment is not cruelty. It is not rejection. It is the ache of a child who wants to blend in, who wants his world to look like everyone else’s, who is already carrying more than his fair share of difference. I recognize that look in his eyes—the same one I’ve seen when strangers stare too long, when friends ask questions he doesn’t know how to answer, when he realizes yet again that our family does not move through the world unnoticed.

So I try to meet him with gentleness. I remind him that it’s okay to feel this way. That loving me doesn’t mean loving every machine that keeps me going. That embarrassment and compassion can exist in the same heart. I tell him that these devices are not symbols of failure, but of persistence—that they are the reason I can cheer for him, listen to his stories, and whisper “I love you” at the end of the day.

And I also do the harder work of letting go of the bargain I once tried to make—of believing I could soften this for him by minimizing myself. I am learning that my job is not to disappear to make life easier for those I love, but to model what it looks like to live honestly within limitation, without shame.

One day, I hope he will remember not the sound of the amplifier or the sight of the tubes, but the way we kept showing up for each other anyway. I hope he will know that his mother did not give up her voice—even when it came out differently than before.