Friday was a big day for us.
It was the unofficial last day of school for my homeschooled girls. We didn’t plan for it to be their last, but they have completed enough work in more than enough subjects with more than enough hours/days and credits on their transcripts.
They started back in August on the same day the college kids started classes despite some resistance to starting before Labor Day.
Today I am confident they are thrilled they started early—so it makes sense they would end the school year before Memorial Day.
Aside from some curriculum and office clean-up and exams and documentation filing, the girls are done.
The college kiddos have been home for almost three weeks. Both kids have already begun summer classes, summer work, and summer adventures.
It only made sense to embrace the change of season and bring on the summer pace for everyone in this house.
Friday was also the unofficial last day of therapy for Jon—at least for now, for the summer.
It is well-earned and much deserved break.
We all just really need a break. I told Sophia that short of knowing exactly where and when Jon needed to be, I hardly ever kept a to-do list for all the other things I needed to get done.
I’m not sure how I did it.
I need the summer to recuperate and organize many things.
Though our schedule will settle down, it is still full of appointments, summer classes (for ALL of the kids), work I hope to complete, and possible time away.
So, for now, we need this season to exhale and rest a bit.
Jon needs to catch his breath. Though he is tired most days sometime during the day, he has never lost sight of continuing to stay the course.
This school year turned out to be far better than expected (academically speaking) and much harder than planned (matters of the heart).
So we are ready to bring on summer break.
While I know our summer adventures will look far different than our past ones, we will definitely do what we can to embrace this season.
As summer came to an end back in September, after another MRI that was more than concerning to our oncologist, the likelihood of surgery was becoming more than a possibility. But we just didn’t know if what we were dealing with was even operable.
After a phone conversation with the surgeon, a tumor review board opinion, then a visit to the surgeon’s office, we decided we needed to move forward with surgery. The recurring and growing tumor needed to be removed sooner than later.
It all happened so fast.
Having another surgery was definitely not something we wanted to have Jon go through. Still, we trusted it would give us a better outcome than not removing the growing tumor and becoming bigger or—worse— inoperable.
The night before the surgery, Jon and I took a walk in our desperate attempt to hold onto what we knew and what was familiar.
With a strong nudge on my heart, I declared, “Jon, we really need to go for a walk tonight.” We both needed to process many things about the weight of another surgery, a growing tumor, and the worry for our kids, two of whom had just moved 5 hours away.
It was a beautiful September evening as the warm sun fell below the trees and the cool breeze chilled the air. It was just what we needed after getting back from our visit with the surgeon.
The O.R. time kept changing, and uncertainty was looming.
As we walked a familiar path, we prayed together. We leaned into one another, unsure of what lay ahead of us.
We were stopped in our tracks as we walked for a stretch in silence and a few tears fell.
We stopped to notice a Blue Heron—remember the October and a Messenger post?—standing very close to the edge of the grassy area. We almost didn’t see it. Others kept walking past this creature that almost was hidden among the blades of tall fading grass and brilliant blue September sky.
BUT WE NOTICED.
One might have thought it was waiting for us.
We moved closer, and it stood still on one leg.
Time stood still.
Many others walking or running the same path passed by and seemed annoyed we were blocking their stride as we stared at the bird.
Maybe they didn’t notice.
But we did.
I took a few pictures, of course. I document all things these days.
I kept asking Jon why the bird just stood there.
The curious creature turned to walk away for a moment, and it lifted its leg and stood there again.
It was unfazed by standing on one leg.
It, the Blue Heron, still stood strong.
We decided it was time to keep walking. We needed to get things done before surgery the next day.
I looked back briefly, and the Blue Heron was slowly and carefully walking away. But I tucked that beautiful creature and this moment deep in my heart, and I wasn’t sure why.
If only I could tell you how many Blue Herons we’ve encountered since then—maybe a few stories for another day. Isabelle even made one in pottery class as a way to honor (and process I am sure) all that she has held in her heart about her dad. This is called the September Heron.
After a bit of chaos with surgery time changes, we raced to the hospital to make our newly scheduled OR time very early the following day.
There was a second long surgery. A tumor was removed, but there were complications, thanks to a stroke that was discovered after a scan and because weakness was evident.
Life would never be the same. But we still see miracles and there are so many gifts.
So rehab plans and began the next steps on our journey.
A treasured walk.
That walk the night before surgery is a treasure and was the last time Jon and I walked together as we always did.
Let me be clear, we have had several/many walks since that eve-of-surgery walk.
But they were not the same, with all four legs taking steps at a fast clip.
Those walks included a crutch/cane, a leg brace, and a wheelchair. Most of those walks were me pushing Jon slowly around a path while in rehab or on our favorite tucked-away path.
Talk about carrying the weight for both of us.
My legs burned, and I often stopped to catch my breath. I did my best not to complain. I made the most of it for Jon as he sat wrapped in a blanket on many cold afternoons.
Jon walked a small stretch once or twice over the kid’s winter break. But it was cold, and he was tired, so he got back in the wheelchair, and we finished the curvy and hilly path. It was worth it.
He looked ahead and told me he would eventually walk that entire path one of these days.
I have no doubt.
He told the physical therapist it was a goal to take a long walk and wanted to get in the water this summer.
As I told the surgeon, Jon would walk out of rehab, having no idea if that would happen. We never asked, “what will Jon be able to do after his stroke?” We kept doing what we had to do and everything we could do while keeping him safe.
Maybe these were lofty goals for some, but not Jon.
Jon has been walking in and out of rehab for a few months now. He is my hero. I am so incredibly proud of him.
It’s been the greatest gift—the gift of Jon growing more independent again.
Since February, we haven’t been able to walk much more because of schedules, snow, rain, and trying to keep up with everything.
But as we finished up our intense therapy schedule on Friday, exactly 9 months since our last walk, the PT told me Jon has homework.
“Ugh,” I thought to myself, “I was really done with homework.” Didn’t I say school was out?
But there is a gift if we are open to receive it.
She said, “Jons homework is that he gets to take a walk.”
“Now, this is homework I can get behind,” I thought, as tears stung my eyes.
As I walked out of the building and helped Jon into the car, tears streamed down my face. I couldn’t hold them anymore.
Jon smiled as tears filled his eyes too.
We both knew.
We both knew how long it had been since we first pulled into that parking lot.
We know what we lost, but we know what we found along this journey even more. We found so much.
“We can take a long walk,” we said.
I always believed he would.
He always believed he could.
We were patient.
We were trusting.
We were ready to lace up our sneakers and embrace a new season. But first, we must rest.
We went home Friday afternoon exhausted after all the hours, days, appointments, schedules, etc.
The next day, after sleeping very late, it was time to complete that homework.
We took a long walk.
It was the walk I told the surgeon we would take right after he told me Jon would need to go to acute rehab. This is the same doctor I told in July 2020, “I believe in miracles, doc,” as he informed me of what he believed was Jon’s diagnosis.
Oh, what this doc must think of me.
This was the walk I prayed God would give us once again.
It was the long walk and the big goal Jon worked so hard every step of the way to achieve.
While Jon has some work yet to be done—strength an function to recover in his right arm, speech skills still to refine, and some walking to improve—he will eventually meet some more of those goals.
He continues to work hard.
We still believed we were headed down the right path without ever asking how long, fast, or what kind of recovery was possible. We trusted and had faith and hope.
For we walk in faith, not sight.
We took that walk, and it was the best way to celebrate.
“Have patience to walk with short steps until you have wings to fly. “—St. Francis de Sales
We just keep putting one foot in front of the other.
I sometimes wonder how we got through all of these very traumatic moments. It’s hard to believe this is our life. Think about it—aggressive brain cancer discovered through an emergency room visit, an emergency surgery, months of treatment and radiation, constant MRIs, a second surgery a year later, a stroke, a seizure, and many months of therapy and healing and more to come.
“but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.”—Isaiah 40:31
I keep returning to the bird; a Blue Heron shows up in places that continue to leave us in awe. It showed atop a building next to where I pulled in to visit Jon at rehab the very first day and then many times after.
Why was that bird the one to catch our attention only hours before our life changed?
Over time, it all began to make sense. Jon would have to learn to stand strong on one leg.
It was not going to be easy or a “piece of cake,” as he said.
As Jon was wheeled out of the hospital to rehab, not by me, but by medical transport to ensure he remained stable on that ride, I wondered what would be next.
But truthfully, I don’t spend too much time wondering; I spend time praying and surrendering, trusting and believing God would keep us on the path.
Each afternoon I arrived at Jon’s room after his long day of therapies—physical, occupational, speech, music, art, and equine—I would wheel him outside and take him for a walk. I learned to push that wheelchair without much effort.
During his therapy, in-patient, home visits, and outpatient these last several months, he learned to stand on one leg and worked hard to make the other stronger. He worked hard to restore function to his right leg, his dominant right arm/hand, and in a few areas of speech.
The way his top-notch, caring therapists and the medical team put the pieces together to help their patient, Jon, leaves me in awe. All while Jon continues to fight brain cancer.
During the entire experience, we have had a few challenges along the way—things that surprised us, hurt us and make little sense—but we keep on moving forward.
We had to make minor accommodations to our home, lifestyle, and expectations. Still, we are making our way despite all of it.
One step at a time.
For the last 9 months, it has been one day, one step at a time. This entire brain cancer journey has been that way.
I found the words, “One step at a time,” scribbled on a sticky note inside a book I hadn’t opened in many months—not since September at least.
Those words are the epitome of our life since brain cancer and stroke recovery entered our story.
I have thought of every way to write what has been on my heart these last nine months. Jon and I have talked about all that we are meant to share.
The details seem so unnecessary as we try to untangle all of them. Some things are better left unsaid. We are certain the message matters more.
I have often sat down and typed out many things I want to say, but those things really become noise amid our story.
Noise because they take our eyes off moving forward. We are not choosing to ignore or distract from how hard our days were. We want to focus our energy on getting Jon healthy and functioning as optimally and wholly as possible, given all his body endured.
Events like strokes, seizures, and brain tumor removal can affect each person differently. We are discovering the complexities of brain cancer not just from our story but also from others. We don’t know why some can heal and restore despite what it endures and others have a different outcome in their fight.
It is still a slow process that requires patience and courage. Determination and a positive attitude definitely contribute to a more successful outcome.
I remember writing about how getting to six months was an unspoken goal for Jon/us. The progress we have seen since even then has been miraculous.
And I know curious and caring minds want to know many things. So many have questions
“How is Jon?”
“How is he feeling?”
“What are the effects of his stroke?”
“How is he moving around, is he walking?”
“How is his speech?”
“What is next?”
The truth is Jon is doing remarkably well.
He maintains the same attitude Jon always has. If you know, you know.
He is determined, humorous, jovial, driven, peaceful, patient, and committed to moving forward with nothing but positivity about this process.
He is still fighting brain cancer, and this aggressive type can rear its ugly self whenever it wants. Still, we will hold onto hope and are grateful for each day we continue to be given.
The stroke took some function from his, his months of therapy restored some of that. The days, weeks and months ahead will restore more. Whatever does not return we will learn to adapt and adjust.
We have adjusted and are learning new things every day about ourselves and others.
And the best news is we completed Jon’s homework for the weekend—we took a very long walk, and there is no stopping him/us now. Remember we celebrated the end of our first round of treatment with a walk/hike?
“Piece” out school year and therapy. Yep, it was intentionally spelled like a piece of cake.
Hello summer, it’s time to celebrate and grab a piece of cake.
Maybe you remember how much we love cake.
Maybe you remember how Jon declared to the surgeon months ago how rehab was going, “It’s a piece of cake.”
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As always we could not keep going without your prayers, your love, your spontaneous meals, your generous support and those who just consistently show up—it means the world on this long journey. Thank you for being in our corner and on our boat paddling and praying with us.