Sam found the above quote on Facebook yesterday and it’s really been weighing heavy on my heart the last couple of days. Especially in light of the last couple of weeks. You see, Sam has been doing really well POTS wise since the beginning of March, so he went and got a job. He’s only missed a few days here and there when his POTS was acting up for a day. That is, until two weeks ago. The Thursday or Friday before Father’s Day, his POTS reared its ugly head with a vengeance. Since March, Sam and I have had an idea of what our life could be like and then the rug got pulled out from under us pretty hard. It hasn’t been the best two weeks.
I know I’ve touched on this before, but the last two weeks have brought it back to the forefront of my mind. As much as I love having Sam home and being able to spend time with him, it isn’t always pretty, and in fact, I want to cry most days when he’s stuck in bed. Having a spouse with a chronic illness is not what I imagined my life to be and I know Sam never imagined having to deal with this. It definitely puts limitations on things, and when we go see family in Minnesota next month, I have no idea what’s going to happen.
So how does one let go of the picture in their head of the life they thought they were going to live? Grieve, talk to someone about it, cry when the urge comes up, and finding a new path. The last several years have not looked at all like I thought they would. God wasn’t surprised by any of it and I can see His hand in everything that has happened up until this point in time. I’m waiting to see how things are going to turn out, and I know they’re going to turn out, one way or the other. And like I said, God wasn’t surprised by this rearing its head. He knew it was coming and I’m trusting Him everyday because He knows.
But knowing that God knows doesn’t make it easier sometimes. Some days, I can absolutely, 100% have all the faith in the world in God and know that everything will work out for my good. And some days I think about the verse and say it while crying because my faith isn’t as strong that day. And some days, I just cry aloud to the Lord because He knows what’s on my heart and I can’t possibly say it out loud.
I don’t know what the future looks like. Every time I think I start to have an idea, the rug gets pulled out from under me and I have to start over. This isn’t the life that either Sam or myself expected us to slip into, but I know that we have each other, we have God, and we have our families who are so supportive. Especially in the days when I just want to sit and cry. It’s okay to water a garden with tears. It’s got to be watered anyway.
I know this isn’t a very joyful post, and I apologize, but I needed to get all of this down. I need to people to know how hard it is some days to find the joy in the new story I’m trying to live. Because I do find joy. I love that I’m home and am able to cook dinners. I love that my job is flexible enough that I can work from my home or my mom’s home. I love that I have an outlet for my writing and that there are people who support me in this endeavor. I love that Sam and I can watch movies together and DoorDash our own separate dinners because he wanted wings and I wanted Indian. I love that I have a garden at my house that I can go outside and check on everyday. All of these things bring joy into my life.
I aim to have a slow life. A life where I can have a cup of coffee for as long as I want to in the mornings, and then walk outside to my garden to see how things are doing. I’m slowly stepping into that life, and I’m excited to see what the future brings. I don’t know what it holds, and I don’t know what it looks like. But for now, every single day, I’m going to be grateful for the life that I have. I’m going to continue making it point to find the joy in every single day. Whether it’s savoring a cup of coffee, or sitting outside in God’s creation and watching things grow. The joy is there, it’s wanting to be found, and I’m going to continue to find it.
The old man has one now and then. 🤣
New book idea. Living with POTS: a spouses view.