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Leaning In

This past week we wrestled as we processed some new information. The brokenness can seem so overwhelming at times when we forget to give over control. We had a hard conversation with our little people, and we leaned in hard over the weekend to find the good in our story.

Saturday we supervised as our new high school freshman invited over several friends to celebrate saying goodbye to middle school. It was a mess of s’mores, slip n slides, rain, and lots of smiles and laughs.

Sunday was the first time I’ve made it physically to church in months. It was wonderful to sit among community, and to get to visit with a few of the kind women that have been reaching out to help meet our needs at home.

Monday morning we loaded up to watch a small parade in one of our neighboring towns, and then visited the dairy farm nearby to feed the animals and enjoy the most delicious freshly made ice cream.

Every time I push past the exhaustion and hurting to get to see joy and connection on my babies’ faces, it eases the discomfort in my bones and brings me the richest joy I can imagine. I’m so thankful I can still get up and embrace the best of our days. If you’re sitting on the sidelines, would you get up too? I promise it’s worth it. We’ve been given so much beauty to enjoy, let’s not miss it!

Please leave me a comment, it lets me know you’re listening!

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For the Love of Hospice

For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up.  Most of these doctors have done me well, and helped me cope with the different challenges of  having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor.  Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.

My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved.  Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them.  I needed all the doctors consolidated into one master plan. It was the /best/ decision. 

The palliative care people? They’re a different breed.  I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team.  They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed.  I was met with such kindness.  They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.

Our days have slowed down.  I have found myself with more energy because there is less running around.  I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something.  When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help.  I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me.  I sure aim to, and I’m thankful to have such incredible examples showing me the way.

Please leave me a comment, it lets me know you’re listening!