Moments, Patterns and Joyful Lists

Reflecting on weeks 1&2

We've been home officially with hospice care now for two weeks. There is both good and hard in being here.

It is, of course, wonderful to relax in our home, visit with family and friends, sleep in our own bed and be able to roll out to the back porch for some fresh air.

The hard is in navigating care at times. Josh is still too weak to stand on his own and the brain tumor continues to limit conversation, making it hard to know exactly what he's needing or thinking. Thankfully, after several year's together I've gotten a little better at mind-reading/guessing. It's not perfect but we're learning.

Generally, there’s a lot of creative thinking and movement when trying to move Josh from the bed to a wheelchair to the couch, commode, around the house, etc. (In case you didn't know, Josh is a whole foot taller than me -- Tricky indeed). Sometimes we even call for aid from nearby friends to assist with a move on weaker days. While it's nice to have extra people around, it's also nice to have time together just the two of us.

We’ve developed somewhat of a pattern in our day with a little venture outside to the back porch in the morning, followed by rest, lunch, rest, dinner some show/movie watching and more rest. The hospice team checks in with us regularly and offers support and encouragement. We continue to be in the waiting, resting, hoping and praying mode.

Visits with dear friends are wonderful but take a lot of energy and often require more rest and recovery - so these are pretty limited at the moment. Even though Josh enjoys seeing people, his brain is working overtime to keep track of the conversations and his body is working hard to just be able to sit or stand up when needed. His status hasn't necessarily improved but hasn't gotten worse. We're still taking it one day at a time.

In the middle of navigating new challenges, there are beautiful moments with friends and family when we can temporarily forget that all of this is really happening. It almost feels surreal as we share stories, meals, movies, and smiles together. We love these moments.

While our photos might often appear happy, there is still much sorrow behind the smiles, of course. Although I still don’t know what God has next in this particular story, I know there is much joy and beauty to be found in each day. Because we have this day to be together.

Since returning home, I started writing about each day. On the first night, I started thinking about some of the things I missed already - simple things like brushing our teeth in the bathroom together, going out to eat, to a movie or walking the dogs. I soon realized that it would be so easy to dwell on what I already miss that I begin to miss the beautiful moments that are part of this day. I don't want to miss the joy found in today. With some God-inspired prompting I decided to also start a "But today we enjoyed" list:

A quick recap of some of the things from this week:

Today I missed:

• Going out to eat with you
• Hearing you tease your sister
• Listening to you debate theology or swap old stories
• Getting annoyed that you are playing your soccer game (again)

But today we enjoyed

• Breakfast on the back porch together
• Watching a newly recommended TV series
• Visiting with friends from out of town
• Holding hands
• Being together

Through this process, I know God is reminding me of the beauty of today. Occasionally, there are days when the "missed list" is longer, but not often. I know it is good to acknowledge the hard but rejoice in the good too. I hope our story encourages you or reminds you, today, to see both parts of your day no matter how good or hard it might be.

At the end of our first two weeks of hospice, there is still a joy to be found in the daily moments together. I continue to be honored to be in a place and time where I can love and care for my husband in a whole new way. I am thankful today that we can even sit beside each other on the couch.

We continue to ask for your prayers for great moments, strength and wisdom.

“Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.”
‭‭Psalm‬ ‭90:14‬ ‭NIV‬‬

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