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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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A Rock and a Hard Place

Sweet Hailie Marie. This girl has shown me more about perseverance than most adults I know. This world is going to feel more empty without her.

Hailie’s father, Mark, and I first became friends in middle school. Thankfully technology has allowed us to maintain our friendship through many moves and life changes. There is a quote from Harry Potter, however, that I feel explains the foundation of our friendship even better.

“There are some things you can’t share without ending up liking each other, and knocking out a 12-foot mountain troll is one of them.” -JK Rowling

Our 12-foot mountain troll came in the summer of 2011. Mark tragically lost his wife while giving birth to their son. I tried to be a supportive friend without really having any idea how to walk with someone through that. Several weeks later, I unexpectedly lost my baby girl, and entered a whole new world of understanding the hurting. Going through those great losses helped give my friend Mark and I an understanding of each other, and forged a friendship of encouraging each other through a pain we both now knew very well.

I’ll never forget the phone call which seemed only a short time later. Mark’s daughter Hailie had brain cancer. It was an extremely hard thing for me understand, but I watched the family take this new challenge with strength and calm.

This is when I became privileged to know a little girl with fight and determination that is awe-inspiring. Three times over the next few years she fought this beast. She bravely faced the treatments that stole much of her childhood, and she pressed on. She’s fierce, and she’s gentle, and that girl always has a smile. It’s been tough watching her family walk through this suffering, but seeing how they handle it with such calm perseverance and deep trust has been inspiring to me.

Now we know that the time to fight has come to an end. That beautiful, courageous girl is not going to be with us much longer. It’s excruciating. It’s confusing. I know I have argued with God many time over allowing so much heartache in this family’s life. Answers to questions we’ll never know, but I do know that Hailie, as well as her family have given us all a lesson in perseverance, the importance of family, and the hope that can never be squelched by the darkness.

Will you keep them in your thoughts and prayers with me? These days ahead promise to be heart-crushing, and sometimes I lose the words to pray within the searing of watching my friend walk this path of suffering.

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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.

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The Long Goodbye

Today I am remembering my pastor’s wife, and sweet friend Kara, on the day she left this world for the Heaven she so joyfully believed in. She is missed, and the legacy she left behind is one of great encouragement and grace. I know I was honored to learn from her about life, family, and faith.

Today her documentary came out. I encourage you to watch it and learn what made this woman such an inspiring friend. I am still challenged by many of our conversations, and always striving to love big like she did.

Click here for a link to the trailer.

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Twists

Yesterday started out with a heartbreaking phone call, and ended with me back in the operating room having one of the procedures from Friday needing to be redone. For a Monday, it was a doozy. I kept finding myself wanting a break long enough to have a hard cry, but the day was just non-stop happening, and there was no time for that. For a hot minute I was angry. I was complaining, and I didn’t think it was fair. Maybe it wasn’t, but grace still showed up. It showed up in my mother-in-law being able to handle the details of the hard morning news for me so I could get to the doctor, and my angel of a neighbor not only driving me back and forth to the hospital, but also showing up to make sure my little people were doing ok, and receiving a homemade meal for them, cooked by someone I’ve never met. Even when I painfully eased into bed last night, my pillow didn’t need to catch a single tear, because while my husband is away on work this week every little body in the house has taken up residence in my bedroom to be close to me. It’s just the cutest thing. I don’t deserve such gifts, yet they flow so freely.

Today I’m a little shell-shocked. My heart is sad. My everything is hurting. My mind and body are exhausted. But there is an unusual amount of sun today, tiny sprouts pushing up in my windowsill, and my kindhearted nurse will come by to care for me and make me laugh as he always does. I hope that on every hard day I continue to be reminded to look for the gifts, and I hope that as my children grow they will learn to do the same, because it sure makes the worst of Mondays more bearable.

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