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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.

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The Good, the Bad, and the Beautiful

This was such a rotten week you guys. I would recount it for you, but seriously I spent so much of it face down I’m not even sure which days were which.

Mostly what I want to share with you about this week though is today. Today was a day of scrolling through the camera reel and remembering, or maybe just really seeing for the first time the big and beautiful and maybe even amazing things that had everything to do with survival, whether I knew it at the time or not.

There was ugly. There were struggles and new limits and fears and just brokenness, but won’t you look with me? See the undeserved beautiful that cast a beautiful afterglow through the storms.

There were tender snuggles.

There were endless warm blankets and hard day socks. Never forget a pair of hard day socks.

There was HILARITY (slash panic) when my children somehow just haphazardly grabbed a mole and brought it into my bedroom to show me. A MOLE people!!

There was awe at the perfectly inspiring timing at which my sweet mama shared her sky with me from several states away.

There was giggling and excitement as the kids set up our tent in the backyard for an end of summer camp out, which I could see in plain view from the giant bay window at the foot of my bed.

There were breathtaking flowers along the walkway to the hospital.

I wasn’t stalling, there were like, a LOT of them!

There was cheering as my soon-to-be-school-goer beat me at his new letter sounds game.

There was the sweetest little pregnant mama houseguest who seems to think I’m the bestest snuggler of all….

And after… I lost count how many… days of not leaving home for anything other than the doctor, after a few dry runs and a lot of help from my wingman this morning, I busted on out with my two big boys for this…

And this…

AND antiques…

I don’t quite remember how I got back into the house, but I did in a sore, exhausted, pale-ish, and wonderfully happy and satisfied heap, where I intend to stay well into the snuggles of the evening. Who knows, maybe we will find another adventure or two to cram in before sundown. 😉

Look back through your own week; did you miss any hidden gifts that might have been the very things that carried you to the weekend?

I love it when you leave me comment-love; it lets me know you’re listening!

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Home Calls

This is a bunch of pictures… and would you believe this isn’t nearly all of them, AND there were some occasions I forgot to even take a snapshot?? Truly though, in this case a picture is a thousand words to see the joy and excitement these babes of mine got to experience.

. . .

We had an incredibly wonderful opportunity to visit our homeland over this past few weeks. When the hubs had to go back out to Colorado for work again and the kids realized they were out of school for this one, they started begging for all of us to come along. I honestly did not have high hopes that my energy levels would keep up, or that my pain and muscle spasms would survive the 18 hour car ride, but as time grew near it was obvious how much their little hearts needed the joy and sunshine this trip would bring, and I stopped seeing obstacles and decided it was absolutely worth digging my deepest to make it happen.

We had a outstanding time. While the man of the house worked and stayed up in Denver, the kids and I shacked up in a hotel (yay frequent travel points?) in Colorado Springs, and we packed as much as we possibly could into every day. We started with a trip to the grocery (hallelujah for actually knowing what aisle to find things on for the first time in a year!) and settled into our home base where we could easily retreat to cook, eat, rest, play games, and cool off in the sparkling outdoor pool.

It was glorious to actually be able to feel the sun on our skin again, and to breathe the thin, dry, mountain air. The brief rain showers were worth dancing in because they were fresh and actually cooled things down. Lightening bugs are cool, but my goodness how we’ve missed the sun and the beautiful mountain peaks.

We packed our days full of visits with friends from sunup to sundown, even having some camp out with us in our crowded hotel room to stretch out the hours spent together. It did my heart such good to see my little people squealing with treasured friends, young and old. We visited as many as we were able, and still felt like we needed another week or two to see everyone we wanted to! We did the best that we could, and resolved it would have to happen again some time.

We visited our favorite parks, restaurants, stores, friends’ houses, and met up with neighbors, teachers, therapists, and dear friends. We were so exhausted each night, but never enough to keep us from rising with the sun to do it again. Our friend tanks were filled, our smile muscles given an excellent workout, and our bodies kissed with new sprinkles of freckles.

We got to see some of my family on both ends of the trip, and meet up with some sweet friends from California. We worked in some epic favorites like Leon Gessi’s pizza, BJ’s ice cream, Lava Land, Casa Bonita, and Denver Biscuit Conpany.

It was a ton of work, and loads of fun, and not without pain and exhaustion and some pinching and poking in the car… but it was epic and amazing and worth every sacrifice. The car ride home was a little bit quieter; contentedly tuckered out little people dreaming of their adventures… in between waking up and breathing too close to each other’s space, but all in all it was good. So good.

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