What Progress Looks Like in a High-Needs Household

I got home from an out-of-town specialist appointment today already spent.

Three hours round trip in the van, stiff and sore from the stillness, and my body was done before I made it back through the door. I was hoping Royce would still be asleep so I could have a few quiet minutes before the next thing started. Instead, I walked in and heard him coughing immediately. Normally, after we have been gone for an appointment, he runs to greet us. This time he stayed on the couch unmoving, Gatorade beside him, cartoons on, too sick to get up.

And standing there in that moment, it hit me.

The day was over.

And somehow, so was the week.

Tomorrow is already Friday.

Weeks like this disappear fast. My life is already built around care work, therapy, appointments, paperwork, and whatever decides to break while I am trying to keep up.

I look up, and the time I meant to use building something better for us is gone.

This week I made a few TikToks and wrote one essay to pitch. Small output, hard won. But it is also not the week I meant to have. I did not work on my book. I did not practice illustration fluency. I did not get ahead on blog posts. I did not learn more Canva. I did not get my printer and scanner working. I did not make progress on setting up my WordPress shop so I can start selling the coloring pages and journal printables I keep trying to move toward.

This week was already spoken for. Channing had talk therapy and OT. Royce had speech, OT, and behavioral therapy. We squeezed in a video visit on my phone while he coughed until he threw up. Rae had a dentist appointment. Thy had a neurology appointment for her migraines. I still need to deal with housing paperwork, Social Security, the food stamp office, rescheduling Royce’s pediatrician, and accommodation forms so we can try to get a four-bedroom and make room for the safety bed he needs.

Then the kitchen faucet broke, and we were without a working sink for eight days.

I am over here trying to build a digital shop and a more sustainable future, and for more than a week I could not even use my own sink.

Even when there are no extra appointments, our normal week already includes four therapies for the boys. That is the baseline. Before the specialists. Before the dentist. Before the sick visits. Before the paperwork. Before the maintenance requests. Before the million little interruptions that eat the usable pieces of a day.

I am disabled. That is not a disclaimer. It is just math.

I do not start with endless energy, and when there are two appointments in one day, the day is usually shot for me. My brain is still moving. I am still thinking about the book, the blog, the art, the printables, the shop, the future I am trying to build. The drive is still there. The ideas are still there. But the usable chunks of time get swallowed first, and my work is usually the first thing to go.

I love this family. The things I do for them are evidence of that love. Making sure my kids get the therapies they need, pushing for medical answers, filling out paperwork for better housing, advocating for accommodations, and still coming back to the future I am trying to build for us.

And yes, it is frustrating.

I want better now. Sooner than later. I want to see clear results from all this labor. I want to feel momentum instead of always trying to create in the leftovers. I want more than scraps of time and tired little fragments of energy.

But this is the pace of it here.

By the time the house is quiet, there may only be enough left in me to answer one email, fix one typo, move one task forward, or jot down one paragraph before my body is done.

It is a scrap. But it is mine.

And I am putting it where it belongs.