It is late for me and I am tired. I thought about taking a night off from writing but it is also cathartic to get thoughts out of my brain. We celebrated our oldest son’s 5th birthday this weekend, and between that and nursing a sprained ankle (ugh, don’t ask, I am a klutz) my brain has been scattered and for once, not in some of the dark places it has been of late.
Despite being in a good place, there is a cloud over my head called “open heart surgery”. As we loom closer to our toddler’s upcoming surgery I feel a sense of doom, but also, a feeling of being ready to get it over with. First off, I know I promised a story about Bowen and I’ll get there in a later post- but for the time being know that we’ve had Bo scheduled for open heart surgery since October. As it has drawn closer, I’ve thought, and meditated and prayed and talked a lot about how to prepare myself and our family for it. While this isn’t Bowen’s first procedure, its definitely the biggest and scariest one, but hopefully the apex of his condition our the “normal” returning soon after recovery.
So how does one prepare for the big procedures- the “scary stuff”? Well, I’ll say that I think the answer comes from you! There is no cookie cutter mold for how to prepare yourself for the fear and uncertainty that goes with being a medical needs parent. You sort of fly by the seat of your pants every day. You find a normal, then it gets upended in some way, then you re-adapt. The scary stuff just settles into your being and it feels like it becomes a part of you. Sometimes it feels like its eating you alive. Sometimes it feels like it is all consuming drowning you and blocking out every rational thought you might have had. Sometimes, you can wear it proudly- you look at your child and see their smile and you gush knowing they’re your everything and know that despite all their challenges, somehow it might be ok one day.
A few weeks ago, I had a really tough day and one of the thoughts consuming me was looking at Bowen’s cute tummy and chest, and thinking of the scar that in a few weeks, will mar him. I don’t want this for him. Despite his other procedures and g-tube placement something about this surgery just feels so different. I don’t know why his other small scars or even his g-tube doesn’t bother me. But again, this just feels so different.
What I am learning is that it is really important to deal with the little stuff because when you get to the big stuff, you reach a point where your tolerance is too low. Then you have bad days like me- bawling about scars. The minor procedures are big. The diagnoses- even if not life threatening- are big. And they deserve your attention for you to process them. Allow yourself to be in grief. Or just allow yourself to be present in the place you’re at- denial, anger, bargaining, etc. You don’t have to fall apart at every x-ray or appointment. You’re tough, like all mamas are. But you owe your mental health the grace to be in a space you don’t want to be in, even if it isn’t life threatening.
You can also prepare yourself in concrete ways too. Set up a meal train ahead of time. Set a plan for siblings to be with family or friends for a few days so you can focus on the tasks at hand. Let your house be a little dirty- your family can forgive you. The concrete things will help, but the most important is to do the things you need to be in the best mental frame of mind as possible. At this point, I’m grateful for my really bad day 2 weeks ago. Since then, my mind has felt more clear and I’ve been less emotional about the surgery. I am going to allow myself more of the bad days in hopes I can learn to process my emotions better and then be a better mom for my kids. Maybe that can help you too.
Somewhere In Between 
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