Lean in
The holiday season always brings up all the feels - everything I’ve held in all year comes to a head. It bubbles over and pours out of my heart in the form of impatience, anger, exhaustion, overwhelming, otherworldly, love and gratitude.
The holidays (along with any birthday, special occasion or random Sunday through Monday) highlight the blatant unfairness that is my daughter’s life. Every single moment of every single day is so damn hard. She is having more breathing issues, she is having a spike in seizures, her left leg doesn’t want to move while walking, she is having a hard time coordinating her muscles to chew her food or drink water without choking. Her tremor is so bad she can’t stay upright in her chair without sliding out, she can’t sit up in the bath without crumpling forward as though the weight of the world is on her shoulders. This list outlines the harder days, but the aforementioned are just daily functioning, surviving - this doesn’t even include the living. Our girl’s body has to work double time to simply keep going and then we add in the fun, the adventures, the things she enjoys to do.
Ev has to breakthrough these things just to enjoy life’s simple pleasures, beauty and joy. Amazingly, she does all this, most days, with a smile on her face and a pep in her wobbly step. How heartbreaking is that? For many other 7 year olds, tasks of daily living and the fun of being this age go hand in hand- they are not mutually exclusive, but for Ev, many days, they are. She cannot do one without costing the other.
Why are the holidays such a glaring reminder of how challenging and different things are for our girl? Maybe it’s because we try to do more “festive” outings, activities and gatherings, more things out of the ordinary day to day, more spontaneity. Maybe we try to push her to do more of what everyone else is doing and we just aren’t like everyone else.
Maybe it is a reflection of my own inner workings- wanting to meld in but also perfectly content viewing things from the outside. Maybe I want things to be a bit easier for us but at the same not wanting to change anything that is. Maybe this is just another layer of finding contentment and peace in what we’ve been given - of living out our life just as it is in all its beautiful brokenness. Maybe that’s it and maybe I’ll be okay with that. Just maybe.
Hopefully someday soon. Today would be nice, but until then we will continue to find joy and fun in the things that are harder for us because it keeps us in a place of gratitude, love and hope. We will continue to lean into the beauty of our life until maybe, just maybe, the holidays will hurt just a little less.
