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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!

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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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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.

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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.

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