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Memories in the Making

We’ve had some difficult conversations as a family about what our future may look like. Mostly to be forthcoming with the kids, because even though we never can truly know the days ahead, it’s fair for them to be prepared based on what we do know. These conversations have opened up a lot of dialogue about the here and now. I know we all wish to be kind and loving and live our best lives every day, but sadly it often seems to become most poignant once you have a scary unknown on the horizon. I wish we could all start sooner, but I know firsthand how easily we get caught up in ourselves.

As a family, we continue to talk about the importance of letting the little things go, and making memories that are rich in kindness and large in love. We talk about making choices that will leave us with important experiences rather than things. We talk about what will be left behind when each of us are gone.

This train of thought is what spurred us to get away for some fun and relaxing family time together. We needed to just be us and focus on enjoying each other and spending time together in some of our favorite ways. Our everyday consists of a lot of time with me in bed, or laced with doctors and medicines, so we went for the opposite and ran for the sun and sand of the beach in Boca Raton Florida. It was glorious!

We had two extra daughters along with us, and all the kids were troopers for the two day car ride squished into our Pilot. They passed the hours with pipe cleaner creations, jewelry-making, mad libs, and tons of snacks. Add a little fighting and a lot of giggling, and it was a road trip for the books. We were rewarded with a week of sun-kissed skin, sandy toes, scuba diving, snorkeling, go kart races, bumper boats, and late night swims. It did my heart so good to see the kids able to just be kids; playing and laughing and enjoying all the things a young one should be enjoying.

It was a little bit intimidating at first to think about leaving my comfort zone of home. I had to push back fears of getting stuck in a hospital far from home. We don’t always travel, but when we do we make sure to check out at least one local hospital… this time for a terrible allergic reaction I had to some antibiotics on our drive to Florida. I received the best possible care though, and it hardly put a wrinkle in our trip. The rest of the week I felt rested and relaxed and enjoyed days of less pain and more energy after drenching myself in the salty waters. My family was helpful and patient with my pace, and never complained when the time came for a recovery nap.

We returned home with tan lines and a sandy car and hearts full with memories of a wonderful week just being us. No worries. No doctors. No scary talks. Just fun and sun and ice cream and enjoying each other’s company. It was worth it. Every bit.

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Waves of Today

Lying in bed with big medicine, praying the deep throbbing would settle down, but still reveling in the amazing of today. It was such a good day. I was met by the prayers of my people, and it was wonderful to feel wonderful for awhile. We basked in the sun and rolled in the sand and splashed for endless hours in the big salty ocean. My body felt at peace and so relieved in the cool, clear waves. Visions of sand castles and beautiful shells and tiny fish and a giant stingray dance when I close my eyes, and I’m so grateful for the lasting grace of this day.

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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?

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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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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.

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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.

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