Posts tagged self care
What's next?

I call this selfie, “Hiding from life”. I don’t know about all of you, but this Fall is doing a number on my sanity. Pretty sure I blinked and we were already halfway through September. Typically, I thrive on being busy but this season just has me wanting to crawl back under the covers, and with so much uncertainty in our life it’s not hard to see why. I took this week to check back in with me and remind myself that sometimes the best answers to the big questions are little. In typical Adelaide fashion she helped me along with some special moments of her own.

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Overexposure

Miguel and I do not live near our immediate families which has made this trip to Michigan that much more special. The first week Miguel’s family traveled to join us and the second week mine did. They are deeply engaged in our lives but unless you spend regular time with Adelaide I just don’t think her reality hits home. So it did not come as a shock when a few tears were shed when getting everyone up to speed. I used to feel guilty, or at the very least uncomfortable, when I would share news about Adelaide and the other person would begin to well up. It was not my intent to make them sad, this is just our reality. Was I cold hearted because I wasn’t crying too? Or maybe I’m just overexposed…

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Stall your engines

For this first time since, well, probably Adelaide was born, I am giving myself permission to stall out and just live in the moment on this vacation. Like a shark I’ve needed to keep moving to survive our new normal, even if it was just an inchstone at a time, I was always moving forward. But now for the sake of my sanity, it is time to try a new tactic.

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My double life

I have a confession to make: I’m leading a double life - or at least thats what it feels like. In one life I am the parent of an able-bodied and neuro-typical child, we go to little league games, do homework and fight about screen time. Then there is my special needs parenting life where I am measuring meds, counting seizures and managing medical, therapy and nursing schedules. At home these lives are intertwined but when I step outside of the house the stark differences can brew a social anxiety that I’m just now figuring out.

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Inchstones

What do Hamilton, developmental disabilities and my motto, “taking life one inchstone at a time” all have in common? They were in full effect last Saturday when, after several months, I once again took our kids to the theater to visit Miguel/Daddy at work. I’m slightly ashamed to admit that I’ve written over 30 blogs posts (yes, I counted them) and I have yet to do a deep dive explanation of my own motto. I can tell you are clearly as shocked and appalled by this as I am. So let’s get to it!

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Hunting hope

Life with a chronic incurable illness is hard AF. Societal standards tell us to downplay our struggles for a variety of reasons, to focus on the good. Somedays that's just not possible. Recently we've found ourselves in a rut with Adelaide's care and honestly, I'm just really tired. When there is no light at the end of the tunnel how do you hunt down hope? 

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Are you mom?

I never wanted to be a stay-at-home mom. Not as a little girl playing with dolls and certainly not as a 20-something finding my way. Up until Adelaide was diagnosed with epilepsy and Miguel booked Hamilton, I was our family’s primary bread winner and I loved it. In fact, I was out with co-workers, celebrating my last day at one job and about to take a new step in my career, when Miguel called to tell me that he had booked Hamilton and we were moving to Chicago. Exciting? Yes! Moment of panic as I realize my entire life is changing? Hell yes!

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