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Summer Lovin’

Every summer for the past few years we have started off the break making a “summer bucket list” of things we want to do during summer vacation. Some things are big, some are small, but the main idea is to be intentional about using our time. I am a homebody through and through, so I would be perfectly happy snuggled in my nesting place with my tribe. I have wanderers and adventurers though, so we try to plan some exciting things to venture out and try while we are free from school routines.

This summer we crammed in more than we usually do, trying to check off some unique things that I either haven’t done or likely won’t able to in the future. It has been a blast. I have dug deep for energy and stamina to hang with my people, and while the nights find me collapsed in an exhausted heap, it has been exhilarating to taste so many joys this summer. We stretch me out, hydrate, medicate, and wake up again to take on the next adventure.

From staying in pajamas all day and doing sidewalk chalk, to concert hopping and driving to new destinations, we are creating a beautiful bucket full of the exciting and the mundane of sweet summertime. What is on your bucket list this summer?

If you are friends with me on Facebook, you may have already seen some of these, but enjoy the pictures of some of our adventures!

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

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Home, the Place Where I Belong…

My tribe and I are elated to be spending some time in our old stomping grounds, Colorado Springs. Mark had to travel out here for work, so we made him drag us along! There is so much good to be found in the bright sunny skies and horizon full of majestic, towering peaks. This is our place.

We have seen so many friends this visit. So many. There are still more we couldn’t even squeeze into our days, but we have dearly enjoyed each heart we’ve been able to reconnect with during our time out here. Old friends are the bestest friends.

My little people have enjoyed days full of swimming, playing with friends, visiting their favorite spots, and then snuggling in for crafts, movies, and massage trains. It has been a wonderful break for our hearts and minds, and we have found joy in our minutes.

Our visit is too short to fit in all the goodness we left behind here, but our love tanks are full as we wrap up a wonderful week packed with sweet memories. Thankful for the Giver of such gifts.

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

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Growing Hope

As I struggle with losing my ability to do so many of my favorite pastimes, there are a few I’m holding tight to. Gardening is one of them. A sweet friend offered to get the seedlings I had been nursing into the ground for me, but I held tight to believing I could do it myself. I so much wanted to feel the warm earth as I babied my sprouts and seeds into the ground. I do not by any means have a green thumb, but have managed for a stretch of years to grow a number of vegetables for my family right in our backyard. I’m missing the Colorado sunshine, but trying to figure out what works here.

I don’t know what it is, but watching things grow has always felt so sacred to me. It truly is a miracle to see tiny dried out seeds change and grow into something beautiful. It brings me such joy. The warm soil, gentle sun, and fresh colors of green make me feel as if I’m in a breathtaking cathedral.

Too weak to stand, I carved out my own small slice of land and sat in the dirt, covered in afternoon sun, and gently pressed seeds and seedlings into the earth. Watching them sprout and grow bigger is bringing me so much delight and satisfaction. Here’s hoping for a harvest, but either way, the working of the soil has been therapeutic for me in beautiful ways.

What is it that you do that refreshes and cheers your soul?

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!

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Goodness

It has been two years since I’ve taken a shower. Until today. Well, a normal one anyway. Because of having a central line in my chest that can’t get wet, it’s been a lot of top half/bottom half showering, or sponge baths and then washing my hair. Well last week my central line was pulled, and replaced with a port that sits under my skin. It’s accessed once a week, which means Monday morning I get to pull it until it is replaced by my nurse later in the day.

Today I sat in the shower and marveled at how incredible it feels to have hot streams of water pouring over my head and down my shoulders. I washed my face and then got to rinse it off in the steaming spray. It!Was! Glorious! I may or may not have had to push my emergency button for help getting out because I overdid it a little. My bullet journal got an early update today, because I don’t even care what happens the rest of the day, this is a wonderful, excellent, outstanding, very good day.

If you can’t reach me, you know where I’ll be! Enjoy this picture of me deaccessed, sparkly clean, and oh so happy!

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

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Weekend Lifelines

It feels like this week just chewed us up and spit us right out. It’s easy to forget to count the beautiful things when it feels like you’re fighting a cold dark riptide, but it’s the snapshot moments of beautiful life-gifts that help us pick ourselves back up, dust off, and try again.

Here’s to the strangers gifting homemade ice cream cake, the beauty in the humming of the clumsy bumblebees, and the quiet peace of holding a sleepy, feverish hand. The things that tug our heartstrings right out and make us want to stand taller, fight braver, do better. Here’s to the weekend of snuggling close with our loves, refilling our heart-tanks, and showing up ready for a new week without truly knowing how we are gonna make it.

Warrior on.