The Days Before Scan Day

Ian’s next MRI is on May 1st. And this time around has had my nerves in a bunch. The last couple MRI’s we have had, while they have been stable, there was notice of Ian’s ventricles increasing in size. When this happens, this is a sign of hydrocephalus, and it was one of the things that landed us in the hospital a little over 18 months ago. We don’t know why they are increasing, there is no obvious signs of tumor growth or any other kind of blockage, but if Ian’s ventricles continue to increase in size, we are looking at him having to have a shunt placed. A shunt is a small device that would be implanted to help the cerebral spinal fluid cycle through the way it’s supposed to.

Another surgery. Another procedure. Another thing to heal from. Another thing to keep an eye on. It’s just a lot. It’s not something I want for Ian. None of this is. But obviously if he needs it, we’re doing to do it, it just makes me yearn for the way I envisioned life for us when I found out I was pregnant with him. This health journey was not even a remote possibility. Because this only happens to other people, right?

This year will be 5 years since Ian’s inital diagnosis. And somehow it feels like yesterday and a lifetime, all in one emotion. Like, I can’t believe this is our life, but I also don’t remember when this wasn’t our life. It’s a heavy feeling. It’s a heavy journey. Some days are easier than others, but the days before scan day are always the hardest. A constant worry of what could happen. Because so many unpredicted things already happened.

But we can’t spend our days obsessing over what may or may not happen. We have to continue on. We have to LIVE.

I noticed how much I really felt like I was struggling this month. We decided to talk to our pastor about our worries and asked for prayers, both for Ian’s continued healing and positive health outcome, and also for our worrying minds. He surprised during service today by having us bring Ian out of the pews, and he had others circle around us. Their hands either in the air or touching us, and they just prayed upon us. And let me tell you, I cried. The feeling of prayer is unlike any other. Letting myself just feel the energy and let it come flowing out of me is exactly why we lean so much into our faith and spirituality on this journey. It didn’t take the full worry away. It didn’t take Ian’s tumors away. But it allows to find the light. The hope. And to believe in something bigger than us. Regardless of what the outcome is going to be.

I think if we didn’t have that experience today, I would’ve came home and sat on the couch. In front of the tv. Or my phone. And just have done absolutely nothing but sit in self-pity. But instead, we were productive. We got out of the house. We got some sunshine. I immersed myself in my hobbies: writing, baking and gardening. I allowed myself to do things that make me feel good. It’s okay that I’m worried about this upcoming scan, and anxious and scared, but it’s not okay to let it consume my life to the point it stops me from doing things I enjoy.

I know as the days get closer, I’ll feel more and more anxious. But I also know our prayer choo-choo for Ian has only grown since 2019. The love we feel from everyone will always outweigh the negative. And for that, we are eternally grateful.

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Perfectly Imperfect