Victories

Dear Addie,

This week was a bit rough, but it wasn’t without its wins.

Allow me to explain.

After receiving a few more diagnoses last week, it’s becoming clearer that the beginning of all of this health chaos was likely a melting pot of so many things. There are pieces we may never fully understand, questions that may never have clear answers about what came first or how it all unfolded. A real-life chicken or the egg scenario. With additional treatment plans now in place, we stepped into this week hopeful, but also careful, watching closely for any signs that things might go the wrong direction.

Now, like I said before, this week was rough, but it started off with a win.

You see, Addie, with you feeling a bit better and your symptoms a little more manageable (or at least a little more predictable) we decided to give church a try. We went in with a simple plan. If things became too overwhelming, the weather was beautiful and we could step outside for a breather. And if illness decided to make an appearance, we would simply head back home, still counting it as a win because at least we tried.

But none of those backup plans were needed.

You sat through the service, not in the hallway, not in the cry room, but right there in the congregation with everyone else. To most people, it probably looked like such a small thing. Just a girl sitting with her family in church, maybe noticing the headphones and assuming you had a few auditory sensitivities. Something ordinary. Something easily overlooked. But to us, it was anything but ordinary.

It was courage.

It was strength.

It was you showing up and pushing through in a way that most people around you could never fully see or understand.

In that moment, watching you sit there, we weren’t just seeing a child in a church. We were seeing the quiet battles you fight every day. We were seeing just how hard you try, even when your body or the world around you doesn’t always make things easy. And Addie, our hearts could not have been more proud. What an amazing way to start the week with such a blessing of a win.

By the middle of the week, we weren’t quite as lucky. Sickness settled in again, gently but firmly reminding us that we might not be completely out of the woods just yet. Damn.

It’s such a strange kind of disconnect to watch it happen. You get sick, and yet your demeanor still seems so… normal. You’re still swinging outside, trying to eat, having opinions about what songs are playing on the radio, and saying “no” to absolutely everything because that is indeed your new favorite word. Addie If at anytime you’d like to discover a different new favorite word, we are here and ready for it...But I digress.  You were not lethargic or sleepy. You’re not curled up looking miserable, the way people would usually expect someone to look when they’re sick. When illness doesn’t match the image we expect it can really mess with your perception. The brain wants things to seem black and white - sick looks sick, healthy looks healthy. Period. But real life often blurs those lines, especially with kids. They can still experience joy, routine, and stubborn independence even while their bodies are fighting something. Somehow, when the sickness strikes, we start somewhat judging the illness on some weird level of what we now consider normal...when NONE of this should be normal.  

Now I’m happy to say the week ended on another win as big sister Clara had to get her wisdom teeth out (debatable if that was a win for Clara), and life, well, just being life, meant you had to tag along and wait while it all happened. What could possibly go wrong in a waiting room at 7:45am? Well...

With auditory sensitivities being by far your biggest sensory assault (even with noise-reduction headphones), an older gentleman came in with his wife, who was the patient, and sat in the waiting room with us. He settled in to watch something on his phone with his headphones. The amount of sniffing, coughing, and throat-clearing he probably unknowingly produced felt like a cruel joke to you. If nose-blowing had been added to the list, it might have really thrown you over the edge. But instead, you just glared at him with every sound and did an absolutely amazing job coping through it all. FYI, the way you were seated, I’m confident he never felt your stare. I would have gladly taken you outside, but an opportunity to work through some coping presented itself, and it felt like a safe space, with an easy exit, to do so.

BIG win, baby girl.

Addie, even if our weeks get hard, let us always remember there are still victories worth celebrating. And sometimes the biggest victories are the ones that look small to everyone else.

But we see them, Addie. And we see you.

And we are so, so proud of you.

Love,

Mom