6/14/25. #150

We only have medical adventures as a family. Most years our medical insurance deductibles and coinsurances were maxed out leaving us on a tight budget - along with physical obstacles and an intense job, vacations didn't happen. And yes, it was awful to watch the medical bills reach into the millions - all while living in a hospital. It was almost like being on vacation and a hotel. I didn't have to cook while there. That was nice.

Sometimes the medical conditions well.... there weren't specialists locally available so there was talk of medical tourism - sending us to a different state to get medical services. That came up often but never happened. When it did come up? I was terrified. I've never been on a plane.

The idea of being forced to visit another state and solely provide care for the kids after a surgery in unfamiliar conditions - I didn't think I would be strong enough to handle that kind of pressure. Especially as they aged because with each surgery I became mentally weaker and completely exhausted by the demands. Julia's last surgery, eventually led to me having a psych breakdown. She was in 5th grade - 2019. All so sad but to also not talk about these things glosses over the grief reality that many face. Knowing others faced and survived these events helped me get through the darkest times. I'm in a healthier place than I was 5 years ago. I can talk about these things now. But still, that's a balance to maintain. I've been struggling all week. I'm not there right now.

I started to scroll through my photos, hoping to pick 10 but every day is an adventure. This morning shouldn't have been but yet wound up being memorable. I'm not going to forget this one for awhile.

The internet went down this morning after a small storm. I figured - might as well go to Walmart with the kids. It's a normal event that we usually do on the weekends.

It was sprinkling and I could see a wall of clouds in the distance. I couldn't check the radar because my phone signal wasn't working either. I packed up the kids and we drove to Walmart. The entire time clouds were intense. I knew it was probably going to rain or storm. I hoped to make it inside before the storm and I probably could have if it was just me. However, as I was unloading and rebuilding the wheelchair, the rain started. Not a big deal. I got Julia into the wheelchair, even put a towel under her so the seat didn't get too wet - I'm prepared like that because, life. Not my first time out in the rain. I've had to learn the hard way so many other times. Rain water drains and pools onto the seat.

What I wasn't prepared for? Jake refused to get out of the car. I had Julia outside in the rain - which was getting more intense every minute. Everything suddenly got worse. I found myself getting drenched in a downpour, my eyes stinging from the wind and rain to the point where I thought I was going to lose my contacts. I couldn't see. Thunder and lightning overhead. Julia was happily enjoying it all. It was all so absurd and thrilling.

Like what do you do? It was going to take me another few minutes to put Julia back into the car and break down the wheelchair so I could put it back into the trunk. The same amount of time it'd take to get inside the building if I could get Jake out of the car.

I foolishly tried for another couple of minutes to negotiate with him. He's much bigger than me now. If he doesn't want to get out of a car, he's not getting out of a car. He doesn't like rain. It was storming so bad by that point, I couldn't even blame him. Julia continued to be super excited about the situation - unaware of the danger. Being out in the harsher elements, in her chair - is something that doesn't happen often. On the drive to Walmart, she thought the clouds were tornadoes. I thought that was cute but as I was standing there - I wasn't sure.

Soaked, I looked around, hoped it wouldn't start hailing as I hurried to get Julia back into the car, which was much harder now that she was completely soaked and had less muscle control. We had to just sit there. It was pouring so hard, couldn't see out of the car windows.

We made it though. All safe. If I had a dollar for every one of these types of adventures the three of us have done? lol. I love the outdoors and trying to include, help the kids along to enjoy it too? Never seems to work out the way I think it will.

When Julia was 3 or 4, new in the wheelchair - I took it off road. It got stuck. Turns out a wheelchair isn't a stroller. Sand/gravel/grass combinations is a nightmare to navigate through. That was an embarassing day. There were plenty of people around at the park who watched us being stuck in a ditch. I'm not even sure how I got it free because no one helped. Maybe just sheer willpower. As I've said before - I'm humbled often. At this point? I'm not even sure it's possible for me to be embarrassed anymore.