Our New Normal

The last few weeks have been rather crazy. I thought we had enough on our plate with planning for this new back to school and trying to get normal life (whatever that is) under control, but life decided that just wasn’t enough chaos.

It started out as a really nice day. I got done with work early and decided to take the girls on a short hike in the woods. This is something I have never done before. I have only ever gone hiking with my husband around here. Or much of anywhere, really. The weather was beautiful and the girls were pretty great on the hike. I was pretty darn proud of myself. There was plenty of time to get home and relax before daddy came home from his new job (which he found shortly after being laid off due to Covid).

As soon as I hit the highway to come home, my cellphone started going off like crazy. I had a couple of voicemails and a few text messages. Now, the place I had chosen required driving away from home to take the closest exit to turn around and head back towards home. As I’m doing all this, I glanced at my phone and saw that my husband was at the hospital and I needed to get to him. He had had a stroke. My husband is 39.

Now, this did not come as much of a shock as maybe it would have for most people. I definitely still panicked a bit, but what’s the use until I know what’s going on? With our kids in the backseat, I just drove. I stopped at my mother-in-laws hoping I could drop the kids off with her and go, but she had already headed to the hospital when I wasn’t answering. As I stood in her driveway talking to her, that’s when I began to get a little frantic, but deep breaths. I would drive to the hospital and she would drive the kids back to her house. Ok. So I drove some more.

My husband has what’s called hereditary hemorrhagic telangiectasia, or HHT. It’s an inherited genetic disorder that causing excessive bleeding in the skin and/or other organs due to malformations in the blood vessels. It’s only in the last decade or so that they have been able to test for it specifically. And a few years ago, they finally decided to test his father for it due to health issues and so all three sons got tested and all of our kids. All three of them have it (the middle one’s is benign). And our middle daughter is the only grandchild with it. So far, her tests on each organ has come back free of issues, but we’re still working our way through. My husband, his brother, and his father are a different story. It’s a painful comfort to have them go through this together.

So, we have been learning as we go. It’s messy when you have a multi system disorder. We’re going to different hospitals and seeing multiple doctors. Then we also have these emergencies and we have to explain what HHT is and they have to contact the other hospital to get all his medical files. It seems more doctors are learning about it. Not sure if it has anything to do with my husband coming into the ER a few times now.

So finally, I get to the hospital and get the kids into my mother-in-law’s car, double back to my car for my mask, and finally head in to the ER and find my husband. He was doing ok while I sat with him. A doctor and a few nurses came and went. Then, when the doctor came back to ask some more questions, another stroke started. Well, we know now that it was a TIA (I think that’s what they said), which basically means it looks like a stroke, acts like a stroke, but is not actually a stroke.

It was frightening to watch. He couldn’t move his hand, his tongue seemed to swell, the side of his face began to sag slightly. He kept trying to talk. I kept telling him to stop. Then, slowly, it began to subside and he could talk again and move his hand and his face began to balance back out. After that, they called for more tests and started getting a room ready for him. He spent the next two nights in the hospital, was almost transferred to another one, but they decided to release him home to rest and the rest of this will be by appointment and spaced out.

Now he’s taking several medications and is on iron for the anemia that HHT can cause. I’m back to work. My mom and stepdad have gone home. And we are still dealing with his mother’s hurt feelings about that, but I’ll save that for another time. Our new normal is dealing with life threatening health crises as though they are an every day occurrence. We explain as much as we can to our kids and do our best to keep it hopeful and, yes, as normal as we can. I’ve been sorting through my own emotions about all of this and oddly, I feel it has strengthened us in a lot of ways. It’s also shown us how amazing the people in our lives are.

And I’m still proud of myself for taking the kids on a hike by myself. And I’m proud of them too!