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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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Incurable Hope

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

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

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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.

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

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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.

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

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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.

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