Resalire. It means “to spring back” and is the Latin root of the word “resilience.” It is the foundation of My-Vida. Resalire. It is the crux of what is necessary when you or someone you love lives with a chronic illness or disabilities. Resalire. It comes in many forms, and changes with every passing moment.

When my wife took the photo above, I was composing a post in my head about how my life and the resilience it requires is like the waves that surrounded me. They ebb and flow. Sometimes they are bigger and more powerful. Sometimes they rattle me and knock me off balance. Some days they completely knock me over, but I have no choice but to get up again and face another wave. Other times they bring me pure joy, as they splash over my body, with a much-needed restorative cleanse, like in this photo, etc. etc.

It was going to be a moving, inspirational, metaphorical sentiment.

While I’m sure it would have been great, I have decided, instead, to share the true face of “resalire” and life with Myotonic Dystrophy.

Today, I took Gianna to the orthopedic doctor for what would be the final x-ray of her broken humerus, a product of slipping on the ice a couple months ago. As we waited for the doctor to come in, I found myself in the typical mundane Facebook scroll, only to stumble upon devastating news. A young girl, only 13 years old, had passed away in her sleep, ending her life–a life spent with parents doing their very best to help her thrive with myotonic dystrophy.

I feel my emotions bubbling up, knowing that I could easily, and will likely, be this mother, four times over, posting this same message of grief after losing my child. I pushed them down, just like I normally do, but then Gianna looked at my phone and put a pause on my emotions.

“Mom, who is that?”

“Oh, she’s just a sweet little girl.”

“Well, what happened to her?”

Oh shit. What do I say? Do I tell her the truth? I don’t want to scare her, however I have also never made it a habit to lie to my children.

“Well, she actually passed away last night, while she was sleeping.”

“Oh, I thought that was me. She looks like me.”

Double shit. Now that pause on my emotions has been released, just like the tears starting to well up in my eyes. I have to explain.

“She does look like you! She’s beautiful! And she also has…had…myotonic dystrophy just like you.”

“Oh.” (Long pause.) “Yeah, she does look like me. And she died? In her sleep? Oh.” (Another long pause.) “Is that why we have to use our machines at night?”

She’s referencing the portable ventilator AVAPS (AKA very fancy CPAP machines) that she, Giacomo, and Lūck use to support their breathing every night, due to the fact that as soon as they fall asleep, their respiratory muscles are too weak to inhale enough oxygen and exhale enough carbon dioxide, both of which are pretty problematic. Now, in all honesty, I know that the machines can’t save their lives if they completely stop breathing, but they definitely help support them, plus send off some great alarms that wake me up in the middle of the night, should they stop breathing for a length of time that warrants a little rousing to get them going again.

“Yeah, they definitely help you, which is why it’s important to use them.”

I have no sooner said this, that I wish I would have said it differently or maybe not at all. I can see her head spinning, as she is remembering that just a few nights ago, she wasn’t feeling well and was afraid of vomiting so she asked to not use her AVAPS machine. I allowed it, since vomiting with the mask on and then aspirating the vomit into her lungs, could lead to fatal pneumonia–your typical myotonic “six of one and half a dozen of the other” scenario. I see the fear in her eyes. And then I see it disappear, as acceptance rushes in, just like those waves in the ocean.

“Oh, okay Mom. That makes sense. Can I look at pictures on your phone from our trip?”

And that is what the true face of “resalire” looks like. I’m sure she’s still afraid, and maybe at some point she will talk to me more about it, but in the meantime, she has found a way to move forward–to spring back from this moment when the reality of her life and disease presented itself in a very real way.

I, on the other hand, continue to have the tears flowing. I am trying to get it together, knowing that the doctor will be walking in any moment, and I just don’t really feel like explaining that I’m crying about a child I don’t even know, about the fate of my children, about this disease. I search for a tissue, momentarily remembering my “Who Will Get a Tissue for Me?” post from last fall, and settling on the only thing I can find in the exam room– a rough brown paper towel to dry my eyes. Gianna watches me, and I know she knows why I am crying. I look at her, knowing that there is an inexplicable ache and fear that exists inside her, as she wonders if she will meet the same fate as this girl who looks like her.

We say nothing.

I take a few deep breaths. I pull up the Photos app on my phone. Together we look and reminisce about the two weeks we have just spent as a family in Costa Rica, working, riding horses, watching the sunset, splashing in the waves. My tears subside, just like those waves that ebb and flow. I know it’s only for the time being, and bigger waves are coming my way, however, it doesn’t matter, because we have each found our resilience, our resalire, in this particular wave.