I had a great plan to send the most beautiful, hopeful Christmas card this year—the first card I would send in a few years. We wanted to celebrate and share the Glory of God for the beauty and sorrow we encountered this year.
But many circumstances just did not allow it to come to fruition. I have learned to let go. Besides, I am sure I am “sending” many more cards in this space than the post office would allow, so here goes.
Please accept this blog post as a Christmas Card from my family and me to you and yours.
A generous and thoughtful friend spent an afternoon in the sacred space of our home, capturing some love and laughter. I will forever hold these photos close and share some of them here.
A year ago today, we walked out of our oncologist’s office with more weight and worry than we had carried since July 2020, where aggressive brain cancer became part of our story.
On the eve of a New Year, where hope lights the way, we were given the news that we would have to watch and wait for clarity on what may either be scar tissue or tumor progression.
Though many details seemed to point in the direction that tumor progression was more likely, we held onto hope and kept living our best days.
With each passing month, MRI and tumor board review, it became more apparent we were given another month to wait with hope and live with joy.
But Jon and I knew deep in our hearts how the cards would fall.
So as summer began, we decided to take a leap of faith in joining a drug trial with intense radiation and traveling and embracing life with complete abandon.
What other choice did we have?
All of these decisions were never easy to make. They were happening around my mom’s falls, rapid failing, and eventual loss. And as my oldest two kids were making decisions about their futures with college.
The same morning my mom passed away, we headed to the city for a scheduled MRI. This MRI was planned weeks ago, just before my mom’s first fall.
We kept the appointment on the calendar because truth be told, the timeline protocols of research required it.
Such a surreal place to be, grieving the loss of my mom while holding space for the reality of the brain cancer Jon was fighting. To make matter’s worse, that day, just before arriving home from that MRI, there was a minor fender bender with one of our kids when they set out to help with something for Jon and me.
The moment after the police officer who answered a question at my driver’s side window may have been the straw that broke this camel’s back.
And the flood gates opened.
Taking in the morning’s events, the loss of my mom, the growth was, in fact, proving to be tumor progression, and now being down a car. The only place I wanted to be was home. Yet we had to make our way to the funeral home to say farewell to my mom.
It (all of it) was the last place I wanted to be after the day we had. It proved to be the most challenging day of my life.
Until, of course, the day after Jon’s recent surgery. But don’t let me get ahead of myself.
God was present in so many big and small ways despite all of the suffering. Prayers answered and tiny miracles, many of those are meant to be kept only in conversations with God and me.
One such answered prayer was the abundant peace and beauty surrounding my mom’s funeral mass and knowing she would eternally rest in peace. I know she would have been so honored by the beauty in that mass.
As summer was upon us, we took a trip across the state to Pittsburgh and then Ohio to visit the campus where Sophia took online courses for over a year. This is the same place where I was pursuing my Master’s in Theology—a longtime dream that is on hold for the moment.
We met some incredible people on our journey to the campus and its surrounding area. We prepared to return home for last-minute plans to celebrate Ian’s high school graduation.
Once home, we decided to take a trip to the Carolinas. After serving at a local church by teaching a summer catechism class, we prepared for another time away for a family retreat, rest, and a little adventure added to the plans.
Our summer was whole and holy, to say the least.
We continued with infusion appointments sandwiched between mountain climbing, zip-lining, the natural water slides, the endless walks in the park and on trails, and meeting people in states miles away. Leading us back to where my kids would eventually call home away from home.
Only God could know the people from around the country who would be placed in our path would fill the lack in many places.
Thanks to a gift from a generous friend (and a wink from God), we were also provided a last-minute trip to put our feet in the sand and face in the sun. The hours of healing, rest, and memories made will sustain us for years to come.
While the official end of summer was headed our way, so was another MRI appointment. The college kids were packed up and preparing to move in two different directions. The girls and I had plans for the curriculum and school work they endeavored to complete.
And then Ian felt a strong call in his heart to change directions.
He took a huge leap of faith and took all of the steps to head to Ohio and Go Where He was Called.
God knew the gift it would be. All Glory to God.
I knew, in my heart, how this could be such a good move for him. But it was all his decision and discernment that got him where he is today.
But we could never have really planned how that decision would be such tremendous support to our entire family, especially our kids.
There was so much for them to process and adjust to while living so far away and starting college life. The entire fall semester was not just about studying and acclimating to college but also worrying about their dad’s health and his growing tumor.
Just as the kids got into their groove, there was the looming reality of surgery. The possibilities and outcomes were swirling around in our minds, and our hearts were aching. We decided together we would not think too far ahead but just take it one day at a time.
So we were grateful they had each other while living miles and hours away.
God knew they needed to have each other.
I needed to know they had each other to lean on when necessary, especially when making those five-hour journeys home.
It still leaves me in awe that the day before we trekked across the state, a last-minute decision was made with obedience and trust that would change the course of their lives.
We made our way across the state. Even with the threat of driving in a tornado and a looming surgery, we knew this school would be the best place for our kids, even with the distance that separated us.
Ohio and Steubenville have been the most supportive community and gathering of faith-filled friends and exactly where they needed to be.
While we told the kids surgery was a possibility, we focused more on their rite of passage of moving on campus and less on the lingering fears about Jon.
Our goal was not to let guilt, shame, or worry of regret weigh on our kids with “would,” “coulds,” and “shoulds.”
Instead, we guided them to focus on the opportunity to grow and live their best young adult college lives while Jon was working through his cancer fight.
Believe me, the kids know the gift it was to be given the freedom to know they were doing the work they needed there at school while we were doing the work we needed here.
Just like my girls homeschooling and being the authority of our time was where my girls needed to be. How could we know all of this would fall into place in a way to allow me to focus on and support Jon in the last three months.
But God knew and led all of the steps that got us here. He may have sent many shepherds along the way. But I will write on this in the future.
My older two did come home more than college kids might want in those early days.
It was hard on the kids being so far away, but with unconditional love for their dad and the support of the school, it all worked out. And they came home where necessary and stayed when it made more sense.
While their dad was working hard to reconnect pathways, they had amazing semester building pathways to their future.
We could have never expected the tumor to make itself known so quickly, thus requiring surgery so fast. Aggressive brain cancer turned aggressive and clearly was not responding to the chemo as we had hoped. It only every really responded to radiation, and a brain can only handle so much radiation if any at all.
The girls were doing incredible work at home while pursuing art and dance and discovering what brings them joy through the semester, all while schooling at home with tremendous discipline.
What a gift it has been to own our time.
When the surgery day arrived rather abruptly (almost like an emergency), our lives changed once again.
We knew weakness and a few other challenges would be possible outcomes of the surgery.
We knew that healing from a second brain tumor removal would require extra work.
We just never anticipated a stroke to become part of our story.
You read that right—a stroke now became the next chapter of our story.
We are now not just fighting brain cancer; we have been tasked to rehabilitate from a stroke. As a note, I often say/write “our” and “we” when it comes to this journey. I am fully aware that Jon is the one who is doing so much of the hard work, but in a marriage, bound by a Sacrament, we become One Body in Christ. So together, we fight, heal, and restore as one.
Sure, we were told of the risks, and somewhere in the many discussions and planning, God placed it on my heart that we’d most likely have some weakness to remedy, just never a stroke.
I can’t even begin to tell you all of the ways God has shown up for us. How He has healed some very broken places. How He deserves all of the Glory for the last three months even in this tremendous suffering.
Have no fear, in ALL OF IT, we saw so much GRACE and MERCY and gifts of peace ONLY a Good and Faithful Father—aka God—could have given to us.
God has proven time and again to gift us with bits of wisdom, with the generous spirits of others, with eyes to see truths where confusion existed around us. We have been given the true understanding of learning to live in the moment while finding joy in the darkest of days.
After a few days of forgetting about that majestic creature, I researched a bit and learned a few things about a Blue Heron that affirmed my belief it was a message from God. I was struck most that it is a creature that can stand strong on one leg, and it can be wildly patient as it waits to find its food.
It could stand on one leg and still be strong.
It can be patient.
And that is what Jon was learning to do, and our marriage is too.
As Jon worked hard to heal and regain strength and mobility, I kept things together at home, standing in for him.
It was not always easy, and it has taken incredible patience. It will require many days of patience to come.
We have seen a Blue Heron in many places over these last few months. The most notable time was when Jon finally got discharged home, and the girls, Jon and I, stood outside on the deck.
We were taking in the fresh air. Jon was full of emotion standing in this familiar, safe place he calls home. Then out of nowhere, a Blue Heron spreads its wings and takes flight from our yard.
Perhaps that bird knew it no longer needed to keep watch over us. At least I am telling myself that anyway.
Being home among the noise and chatter of his girls, standing alongside them was THE BEST THERAPY he could truly ever receive.
Ask him, he will tell you the hours of laughter and joy those girls brought to him and the endless facetime calls from Ohio kids were enough to keep him/us going.
Never once has Jon lost his sense of humor and determination to get things done. Not even now, three months since that surgery and many, many hours of therapy.
Jon has NOT complained once since rehab began. He never complained once as he stayed away from home for those 30 days.
He did not complain as a steady stream of therapists/nurses came through our house.
And he is not complaining now as we are adjusting to a new and sporadic full outpatient schedule among the busy holiday season with chemo tucked in between.
No doubt, He is touching lives with his piece of cake attitude and his nonstop laughter. We are working hard, are a tad exhausted, and adapting to a new way of life. I am now not just a mom and wife, but I am a caregiver and the fiercest advocate. IF you ever need an advocate, you know where to find me.
There are times—in the last 3 months—I saw the face of Jesus (think washing of the feet) when I knelt before Jon to tie his shoes, to help him dress, to hug him, and build him up when he could barely catch himself if he fell.
Thankfully there have been no falls.
Thankfully he has made HUGE strides in recovery.
He is my hero.
The kids and his medical team are beyond impressed with Jon’s daily, weekly, and monthly progress.
I know the circumstances seem bleak on paper because many medical people have told me so. Then they see Jon and decide he is actually a walking miracle and a dream patient because his attitude and joy are utterly contagious. The way he carries himself and cares for himself is par none.
The words strong and courageous come to mind.
He has every reason in the world to give in to frustration and fear. Instead, he leans into joy, laughter, love and embraces his work.
I promise there is no fear because we know God is so very near. We know Jon, and our family has some work to do in this too.
We are not ready to give up. WE are choosing to live.
I do not know why we were chosen to walk this difficult journey. I do believe fear does not get to win.
Love and joy win in this house.
Yes, we get tired. I have never experienced the level of exhaustion as I have these last few months. Guess that is why we take every opportunity to hunker down and rest when there is no work to be done.
So please forgive us if it seems we are too quiet over here.
Yes, we have taken to saying way too many four-letter words—you know, like hope and love and a few colorful ones too (I feel blue). Okay, seriously, I think you get what I really mean—bleep and bleep, so I say, “Forgive me, Father, for I have sinned.” In these times, I am more grateful than ever for Confession and the Sacraments to keep us going.
And YES, sometimes we have felt unimaginable defeat and disappointment more often in places and people (that shock us) than in the circumstances we are called to live. But those are stories for another day because we want to focus on the true, beautiful, and good.
There really is no other way to endure a long race like this. So we continue on this journey, climbing mountains, and taking walks when we can, and living one day at a time. I really missed our walks and was incredibly grateful for the day we took our first walk, but we watched the sunset and the moon rise. God knew it was the exact moment I needed to recharge my weary heart, even if I did most of the work. I WILL treasure that moment for the rest of my days.
There is still work to be done.
There is still cancer to fight.
The fight will continue, and ONLY God gets the final word.
Do I wish things were different? I am sure you know the answer.
There are a lot of things I do not know. But I DO know this brain cancer journey has brought so much joy and only increased our capacity to love and be loved.
I do know the second half of this year has given us incredible memories and adventure. A time that we may not have otherwise had. All Glory to God.
But here we are, unsure of the coming days and year ahead. The fact is Jon has brain cancer and had a stroke during that surgery. Having both makes the fight harder for many reasons.
The details of why you may already understand, or maybe you do not. The details really do not matter, at least not to Jon as he progresses and fights and heals and continues to live with an abundance of laughter and love.
I know curiosity and fear of the unknown can “get the better” of those surrounding someone you love walking a journey like this. With so many things fighting for our time, our job is to focus our energy on the things that breathe life, positivity, joy into our day.
We want to focus on the encounters with people God places in our path and those willing to see the beauty in this circumstance and embrace the joy as we live one day at a time.
We know what we are dealing with, and we don’t have the authority or the ability to predict the future.
So we choose to live well, love well, and laugh often while working hard when needed and rest as much as possible in the safety of the soft place to land we call home.
Brain cancer or any cancer is an ugly disease and can change and affect so many things.
We have learned this in the past 530-some days.
We have learned so much.
We have let go of more.
Yet Jon continues to forge ahead, unaware of his impact on those he encounters, especially those living in this house. His humility amazes me.
We have made adjustments to our home, schedules, and hearts, and even to the expectations/sometimes demands placed upon us as we attempt to live our best life despite a brain cancer fight and stroke recovery.
There have been some tough days, more challenging than any other of the traumas or struggles we have endured to date. Yet it is in those exact moments Jon and I both have seen the grace and beauty of our marriage vows lived out: “for better, or worse, in sick and in health.”
I know for sure we have met God in our suffering. That thin veil has been lifted a few brief moments—we have had a glimpse of heaven.
We have seen peace beyond understanding and a deepening love that God can only explain.
I think back to the quote from St. Charbel I first read during the week of Jon’s initial surgery: “Your journey in this world is the trip of your sanctity.”
I know it may be hard to believe. My job is not to convince you; I merely share those words offering you hope in your difficult days and perhaps suggest you shift your hearts and eyes to the Savior who was born in a lowly manger in the harshest of conditions after a journey His beautiful Mother Mary and Joseph took with unknown circumstances.
They just trusted and believed.
“The light shines in the darkness, and the darkness did not overcome it.” John 1:5
We know the stroke has been an unexpected setback, but Jon has already worked with resolve and courage to catch up these last three months. So hard to put into words all the progress that Jon has seen.
This year brought us heartache and loss and the biggest fight of our lives.
But it has brought abundant joy, and we have been shown immeasurable love and been given peace beyond understanding.
God has been generous in the ways as he has filled the lack—a lack that quite frankly has caused us great pain at times over the last several months.
We are grateful for continued prayers and generosity from friends, family, and those beyond our reach, and those who faithfully show up in ways exactly when we need them.
When 2020 came to an end, we did not know what would be in store. And once again, we say goodbye to another year. We do not know what the new year will hold for us. We barely know what each day has in store.
We are surrendering and trusting God’s Will and plan for our days ahead.
We will continue to hold onto our faith, each other, and the abundant prayers of others that lift us as we move forward one day at a time.
The prayers give us strength and courage and remind us that we can continue to trust in the tiny Savior born on Christmas Day who will continue leading us toward his throne of grace.
As 2021 comes to an end, I want to thank you for your prayers, your endless support, and encouraging words as I weave together the golden threads that God places on my heart and share a tiny glimpse into our journey of faith, hope, and love.
I am beyond grateful and humbled to have the opportunity to meet you here as we journey together in this thing called life.
PS: Enjoy this reel and watch how time flew by in 2021. We are grateful to share the start to another year. Happy New Year.