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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!
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Words on Wednesday
Most of my readers have never actually met me in person! Here is a fun little bit of face to face time I had with my youngest today. Happy Wednesday!
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Being Present
I am hurting in too many places to name; exhausted beyond staying awake for a few hours, and sapped of all my energy. What a gift to be so. I spent it all this weekend, and it was worth it.
I play a constant juggling game of shifting what things I can do, and how long I will need to recover. Any activity at all takes a pretty great amount of effort. This past weekend I did less calculating and more doing. Missing the days of doing projects around my house, I worked hard to make my front porch a welcome landing pad. Tending to plants, arranging welcomes, and repainting a forlorn mailbox left me tired, hurting, and so fulfilled. It was an accomplishment for myself, and it was a gesture of love I could provide my people.
At the end of the day, covered in soil and spray paint, I pushed myself even further to clean up and go out with my loves for dinner. I didn’t think I could do it, but the delicious food and sweet company spurred me through a wonderful evening. The following night, I pushed hard again to spend time with kind friends who invited us over. It would have been easier to retreat to the cool quiet of my bedroom refuge, but I fought to stay up and enjoy the company of loving friends. It was a beautiful evening together.
By Sunday my body was done being pushed, and I had to give in to the haven of my bed for some extra sleep, fluids, and help with my breathing. My bones and muscles complained at all I had done, but my heart was light. I’m so thankful for the opportunities to fight for more, and the strength Jesus has given me to keep taking them. Remind me when I need a push! These times are surely a gift I don’t ever want to take for granted.
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For the Love of Palliative Care
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.
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Hard Fight
I am here.
Head down, fighting hard over a perilous week, but still crawling to stand to chant the victory cheer.
It’s going to take some time for me to recover, but I will get there. In my quiet spaces, know I am deeply grateful for every kind word, thoughtful gift, and whispered prayer. You are my people.
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Wordless Wednesday
Please leave me a comment, it lets me know you’re listening!
Wordless Wednesday
Please leave me a comment, it lets me know you’re listening.
Wordless Wednesday
What If
Admittedly, my self esteem has suffered a bit as my body has wasted away, bearing the marks and shadows of the battle I fight, adorned with tubes and equipment that allow me more days. It’s rare I find myself out in public, but when I do, I find myself self-conscious, and aware of people’s curious stares.
Friday I was wrapped in my oxygen tubing, puffing and stumbling as I rolled my red hand-me-down walker through the door of the clinic. As soon as I scooted through the threshold there was a squeal. “Cooooool! You’re amazing!!!” I looked down to see a tiny spectacled girl staring up at me with a huge grin and a look of awe painted across her face. As I eased myself into a chair in the waiting room, she planted herself directly in front of me and continued to smile and admire my equipment.
Our encounter did not end before she excitedly took my walker for a test run back and forth, back and forth across the room, and my dear friend had her sit on it and pushed her whirling in donuts while she giggled and cheered. She left the room pink-cheeked and still grinning.
What if. What if we all were brave enough to make eye contact, to give a smile and a compliment to the things that puzzle us? What if we looked upon the marks of others’ suffering and found the parts that could make us smile? I think it would be a very bright world indeed.
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Choosing Hope 