Lately, I have pondered, discerned, and sifted through words like beads for bracelets. Trying to figure out what parts of our story are mine to share, what fits, what is worth your penny for my thoughts, my time to write, and what is meant to stay between God and us as he leads us on this Desert Road.
I love to write, but it’s a constant battle. I don’t want to write this story.
A friend shared a Crowder song, Desert Road, with me today just as I was tying up the loose ends on this blog post. The first lines of the song speaks to our story. It affirms what was already written (stay until the end):
“I don’t wanna write this song
I don’t want this pain to be my story
I don’t want this desert road
Are you sure this is the plan that You have for me?”
Writing and sharing are a curious thing.
First, I want to share I sit in awe of the strength and humility of my oldest kids as they are trying to juggle being college students and support life here at home.
They don’t want to deal with the added worry that life has presented them. They didn’t ask for any of this.
One is preparing for her future as she finishes her final semester of college after education, in general, has not been kind to her.
And then our son, who is trying to get a footing in a college semester where worries loom over him. He grapples with a time-sensitive opportunity to travel abroad and yet wanting stay close to home. He wants to be a college kid and not have to come back and forth as much as he has in these last two years. I love seeing him, but Jon and I want that for him too.
Both kids know they aren’t responsible for supporting needs at home but wrestle with knowing if they should be here or there. Yet they both won’t stop doing what needs to be done to help their dad, sisters, and me when necessary.
It all makes sense that nothing is certain in our story.
Their thoughtful and surprising (to us) gesture (read here,) though incredibly uncomfortable and humbling in so many ways for all of us, brought us an outpouring of love and support we hardly realized we needed.
We are incredibly touched by the outpouring of love, prayers, and generosity that continues to flow around us.
As Sophia and Ian shared in their message, some things in our lives have changed, and some have stayed the same. Finding a semblance of normalcy in this uncertain life is a delicate balance.
There are many things we are trying to navigate.
Too many things to carry as we hold on for dear life.
So we stay focused on the Holy present moment.
Disappointments in broken systems, curious things, relationships, and outcomes linger.
Another failing system, the heater, gave us trouble on some cold days this past week.
While we finally have some heat, you wouldn’t believe the story if I told you about this past week. I can’t spin it to make sense of it. But the backup system run by our trusty oil furnace rattled, banged, and clanked. It turned out of control and crashed. It had to be shut off after oil fumes filled the air.
It took two days and many scratching heads, dirty hands, toxic fumes, and phone calls to troubleshoot the situation.
I appreciate their perseverance in trying to fix it. Each person from our service company came with a different understanding and expertise to try to get the job done.
I also appreciate all those who have checked in and offered to troubleshoot, bring space heaters, prepare meals, offer a warm bed, and provide loving support. It means the world to be seen, known, and loved.
It’s hard to explain, but I was grateful to everyone who entered our home and our story this past week because of this lack of heat.
This unfortunate situation felt very much like a Body of Christ moment.
Just as we thought we were out of the woods and the backup system got fixed, the new AC/heat pump system that came new to us through a miracle over the summer nearly came undone and came to a screeching halt.
I could have come undone.
If it were not for the choices we decide to make—laughter is a better medicine. I am not saying we only laughed, but I sure believe our reaction to things can alter any situation.
It was an exhausting few nights of piles of blankets, space heaters, toxic fumes from leaking oil, and dogs who were completely out of sync with all the callers knocking, trying to get us some heat.
You may see why it makes sense that I could come undone.
I didn’t come undone. I may have said a colorful word or two, but it felt much better to laugh rather than get upset.
I’d rather offer kindness, patience, and understanding to those trying to bring us heat. No one is trying to make our lives miserable with a broken heater except that snake who slithers in and uses these moments and people (even those close to us) to steal our peace.
Don’t doubt I was sprinkling holy water all around that furnace because that “snake” likes to hide in these places (ordinary things in life) and try to rattle our cage.
Not today, snake, not today.
I’ve said it before there’s a choice of how we react or respond to these moments. I choose a response that yields better outcomes in my heart for things I cannot control.
Patience, understanding, love, and peace.
I sometimes get it wrong, but I try with all my might.
Don’t worry; we are addressing what needs to be addressed. No one is taking advantage of us. The service company knows what’s at stake here regarding comfort and healing.
Speaking of healing and what’s at stake. I know there are so many questions and curiosities.
We have many of the same.
There is so much we can’t know.
I wish I had more to say than that.
I wish I had some definitive updates and answers. It’s the nature of the brain cancer beast.
But I am also grateful that I do not. Only God can speak to that.
Since July, each monthly MRI revealed tumor progression that finally prompted a difficult decision to pursue more radiation treatment. It was not an easy decision.
We didn’t want radiation, given the many risks and possibilities. Jon and I felt it was our best option to attack what has been growing. Here’s where I ask to not receive suggestions on what we should or should not be doing to cure Jon’s cancer. We’ve researched and considered the best choices for our lives and our means. Though always well-meaning, it only hurts and takes unnecessary energy when we have to sift through the suggestions and advice others offer that they would do if they were in our situation.
I am glad you are not in our situation.
No one but us truly knows what we have considered and pursued on this journey and what is within our means and fits within our priorities in this time we are given.
Now that is out of the way.
Here’s where we are
Our most recent MRI in December gave very little clarity. As we continue waiting for things to settle down and heal after radiation, we focused on our Christmas, birthday, and anniversary celebrations while allowing the kids to enjoy their break without concentrating on what we cannot control.
Get on with living rather than stressing about hard possibilities that leave us in the desert.
We have been mighty exhausted, a side effect of radiation and caregiving, while also trying to live semi-normal lives. Spoiler—nothing about our lives is normal.
The same friend who shared the song I mentioned above also pointed out today that our life is not a typical schedule.
There is no Monday to Friday work week.
There is no weekend to rest.
There are few invitations offered or received.
There is little to scheduling or planning aside from appointments.
Every day we are faced with cancer and recovering from and living with the effects of a stroke.
Every single day and decision is affected by this cancer journey.
This is why we choose to live in the present moment, like when we took the opportunity to get Jon to the beach twice this past summer upon his request.
He could walk to the beach and on the sand, put his feet in the ocean, and allow the waves to wash over him. I will treasure that healing moment for the rest of my days.
If we are going to be on the sand, I would rather be by the ocean, than in the desert.
I don’t know much about other cancer stories and journeys, but I do know brain cancer takes pieces of those we love in ways that I can’t fully articulate. I have friends who’ve lost spouses, parents, and children to this terrible disease. They say the same; I don’t have to articulate it to them. They are the only ones who truly know what we know.
You may recall that Jon had a second tumor removal surgery in September 2021, just after moving our kids to college in Ohio. We have spent the better part of the last 15+ months focusing on fighting brain cancer AND taking steps to heal from the effects of the stroke that occurred because of that surgery.
We are not dealing with JUST brain cancer. We are not coping with JUST a stroke. Neither is just.
Jon has made tremendous strides, literally. Maybe you have seen the posts where I have shared glimpses into life here and there. It has been a lot of work, rest, and patience while expending energy fighting aggressive brain cancer that keeps making an appearance.
When we heard the unexpected words surgery would be needed again last year and more quickly than expected, we knew there would be risks. Unfortunately, the outcome of Jon’s surgery was one of those worst-case scenarios.
Jon experienced weakness on his entire right side. For a man who never stopped “doing,” this has been a massive daily challenge to continue to have little to no use of his right arm. We do our best to find things to keep him active and thriving every day within his capabilities. Jon never stops moving and helping as he can around the house.
For a man adept at being clever and witty, you can imagine the frustration with challenges with some verbal (finding words, not cognitive) expression over the past year. I often explain Jon’s challenges are like getting on the expressway—sometimes we breeze on the road to our destination, sometimes we get stuck in traffic, and sometimes we get off at the wrong exit. Jon just laughed as I read this to him. It’s funny, and its heartbreaking. He didn’t do a single thing to deserve this. It’s just the cross we’ve been asked to carry.
He still maintains life is a piece of cake.
Just as we saw significant improvement in his speech, Jon worked hard throughout the last year and has come far. Tumor progression and radiation side effects set this back.
While fatigue seems to steer Jon’s days, his mobility continues to improve dramatically. We hope to return to therapy as soon as we have our next MRI and our new insurance approves everything we need right now. Please pray for this.
These changes and red tape take time. TIME is precious.
We embrace it by taking walks when we can. I miss our walks. It’s that simple.
I recently shared a reflection about a walk Jon, Ian, and I took before he went back to school. Jon managed to walk the entire path, slowly. Though he walked the whole way.
Undoubtedly it was better than after he was discharged from rehab when he didn’t walk and I pushed him up and down those hills many times. It might have been the best workout I have ever had while watching the most glorious sunsets with my favorite guy.
Last year around this time, Ian and I pushed Jon up and down that hilly path in a wheelchair. On the final turn, Jon took a few steps with his cane in hand toward the car before he had to sit down.
Maybe you remember I told the surgeon I believed in miracles when he told me what he found in surgery. He never gave me a timeline. Not a single person has yet.
I am grateful for that.
Many things knocked us off our feet these last two and half years.
But we keep getting up again.
Did I tell you about the crazy bat that flew toward us in the garage and knocked us off our feet last February? I was on a ladder changing a light bulb, and the girls and Jon were below. Out of no where came a bat and a thud. UGH.
I’ll never forget my training with the physical therapists as Jon was preparing to be discharged from rehab. I had to learn how to guide him as he climbed stairs, support him in the shower and pick him up safely if he fell. The girls and I used those skills and carefully up their dad.
As I learned to catch him if he fell, I was intent on remembering to “lift him up” through it all. We all need to be lifted up by those around us, especially at a time such as this.
I couldn’t help but think of the irony when I learned to pick him up if he fell. I once wrote about a time when Jon taught me how to fall and the patience he showed through it all. It may have been where I fell in love with him.
Never mind how much I prayed he would never fall.
So a bat and a fall…you know that is bat sh#& crazy…(sorry for the colorful words, I couldn’t help myself). Fortunately, no one was hurt in the fall. It just made us more aware. We were already aware because Jon had a seizure and a trip to the ER weeks before. As you can imagine all of these scary things has been hard on the hearts of our young girls.
Remember I said we keep getting knocked down and then get back up again?
We’ve had too much of that. Our faith still stands.
Our 90-year-old air conditioner broke, the heater broke, and the tumor has progressed in the past several months. Never mind the car repairs and a slew of unexpected things that were broken and need repairs.
It really is all too much.
I am often told we are blessing others by being open to receiving and allowing others to help when needed. People want to help in whatever way they can, and many beloveds often remind me of this.
We are open to receiving.
I am also often told I need to keep sharing our story.
Sometimes it feels like too much to do that.
Sometimes it feels like what I share is not nearly enough, but it’s not only my story to tell.
So I must share with respect, dignity, integrity, and privacy. Sophia and I talked a bit about this on our newest podcast episode. We have a conversation about Saints and Threads to The Land of Milk and Honey. It all ties in here.
So here I am again, sharing what feels right, even if it doesn’t all make sense, even if it isn’t enough.
One thing this week has reminded me once again as each heating expert entered our home and those who supported us in other ways is we can’t do big things alone.
We can feel frustrated and weary and have every reason to be mad or overwhelmed.
That’s our story, and I’m sticking to it because the snake doesn’t get to win.
Only light, gratitude, hope, joy, and the perseverance of those willing to not give up for the good of another win.
As I have been weaving these words in my mind all week and weaving bracelets to give me inspiration or maybe a distraction from the craziness of the no-heat week, I am reminded that even in the frustrating hardships of this journey, the Abundant Grace of God is present and among us.
He provides milk and honey when needed to bring freedom and peace as we walk long journeys of suffering. Didn’t he bring the Israelites out of Egypt?
We can’t do it alone.
God is with us. We will continue to trust His plan for us.
I don’t always know what is worth writing or sharing; I am honored to have been trusted to walk this hard desert road and been asked to share where we see God in our lives along the way.
This is our story, in a land of milk and honey on a Desert Road, and I am sticking to it.
So I’ll just let the words flow—like milk and honey.