I slept in my bed at home for the second night in a row.
That should not feel like a big deal.
It’s a huge deal to be sleeping at home in my bed.
I am so grateful to be home with Jon lying next to me.
It’s good to be home.
It has been another week, another chapter, added to this brain cancer story and caregiver life.
Since arriving home, I have been pondering so much about the meaning of home.
There is no place like home.
Home is my beginning and end.
Home is my sturdy shelter.
Home is where we weather the storms.
Home is where we rest and heal.
Home is where we sow seeds and tend our garden.
Home is where love is.
Home is where Jon is.
Home is where my kids learned to talk, walk, run, grow, fly, and become.
Home is where I laugh, cry, dream, plan, write, hope, create, and grieve.
Home is something I have searched my whole life to define. There definitely will be more to share on this in due time.
More than a week ago, I reflected on how I kept seeing an image of my bed and pondered where and why this Lent season was calling me to focus my attention in that direction. I discerned I was meant to rest, pray, and serve/care for the person who shares that bed. At the same time, I plan to focus on the interior life.
This is where I am called.
In addition to getting sleep where I rest my head, Lent seems to be calling me to fast, pray and give alms to my husband and my children as we suffer in sorrow and try to find joy together in this tender time.
This Lent is not just about the need for rest, as I shared, but is also a poignant reminder of the sanctity and sacredness of marriage—in sickness and health. The sacrifice and dying to self through the intimate and tender giving of care to my precious husband as he walks the most challenging legs of his cancer journey.
I will continue to focus on getting Jon and my children through these days. My time to rest will come. And no worries, I will rest and fuel as much as possible as I care for Jon. You already know where you will find me standing, sitting, and sleeping until the bittersweet end.
Last week I also shared a reflection on prayer. I am always grateful to have documented words to reflect on when I need them most.
Lord knows we need to be wrapped in prayer. We are undoubtedly receiving much grace and supernatural peace because of the abundant prayers from all corners of this beautiful earth.
Faith, Hope, Love, Trust
I have had a hard time focusing and finding words this past week. So I just keep going to my inner room in the silence of my heart to pray.
I can’t find words other than Jesus. I trust in you. Please get me through. and Come Holy Spirit for those hard conversations.
I know I don’t need words.
God knows my heart.
“The Father knows what you need before you ask him. This is how you pray: Our Father who art in heaven, hallowed be thy name….”
I have been focused on asking God to merely hear the cries of my heart as I meet Him in the depths of my inner room. That is the definition of the interior life. Then He sends me reminders in our rooms, that I know he hears, butterflies, room numbers and the people we encounter.
Interior Life and Inner Rooms
I am glad I can go back and read the words I have written to keep my heart united with God’s.
May we ask, so we receive. We have been open to receiving; God has provided everything we have needed.
May we seek, so we find. So many things have been found, including a voice.
May we knock, so the door will open. So many doors have opened for us.
In the words of St. Thérèse of Lisieux “For me prayer is a surge of the heart; it is a simple look turned toward heaven, it is a cry of recognition and of love, embracing both trial and joy.”
After a weekend-long stay in the hospital in February, we are still trying to focus on recovery while regaining endurance. Rest was not coming quickly and was easily interrupted.
Last weekend, I was losing sleep looking ahead to a week of deadlines, paperwork, worry for another impending MRI, and demands (necessary and very unnecessary) of life in the middle of all this.
I shared some thoughts that were swirling in my head about a hospital stay and how interrupted sleep has brought me to my knees…the caregiver life is where I have been called, so I show up and rest when and where (hospital couches and chairs) I can. I can do hard things in the name of love. Later, as I nap, I’ll dream of mountains and beaches from that sofa.
I love that sofa, and except for our bedroom, the room where it sits has quickly become my favorite, most peaceful room in our humble abode. Our living room houses a collection of many inspired treasures, a litany of memories, and the most prominent LOVE sign that marks the sacred space where Jon and I gather during the day to pray and rest.
This is our domestic church and our inner room.
After sharing the post that held those words a week ago, I went to bed, desperate for an entire night’s sleep.
I didn’t get the rest I needed in my bed at home.
Then my rest was shattered as I was awakened in the middle of the night.
A storm was brewing.
It wasn’t a storm outside, but one brewing in Jon’s beautiful head.
The girls and I kept Jon safe through this storm until the calm returned.
EMTs and a police officer entered our home in the wee hours, Flashing red lights, a flurry of calls, a gathering of things. I knew I would be in for a ride.
It was odd just before the last visit to the hospital, I told the kids I thought I should pack a go bag.
I wish I had that go-bag packed.
Thankfully the kids and those they chose to be charged to care for them helped make that happen.
Given the nature of Jon’s disease, I knew we would soon have moments like this. Still, you are never prepared for it. I wondered what was next in my post on Things I Woke Up Thinking About.
Be Not Afraid, I remind myself, and so did a friend who sent me a simple message that read: Isaiah 41:10.
Those are the kind of messages that give me strength and support.
I did not expect this mid-sleep wake-up call and a call to 911.
Though my brave hearts handled the entire situation courageously and calmly, I wish they could unsee, “unknow,” and “unhear” the storm Jon’s mind and body endured. I wish I could take it from their memory and mind.
I wish that my brave heart, Jon’s brilliant, witty mind and meticulous memory were what they used to be. He is fighting so hard and with so much positivity. He needs to work to regain strength after this week.
He has courageously weathered so many storms, but the one, this week, took my breath away.
There have already been so many ER visits and dramatic medical moments. I never asked for any of this. But God seems to trust us with this story to bring greater glory, and while it hurts like the dickens, I see the gifts and glory.
We’ve already had so many traumatic moments, and this event was much more severe and complex than the one Jon had over a year ago.
The events surrounding finding the pulmonary emboli in February knocked us off our feet. We landed on our knees to storm the heavens in prayer once again. We kneel in prayer in thanksgiving that we avoided a catastrophic event and cry out enough already.
Endurance and Perseverance
Jon’s endurance has already been challenged enough. Yet he perseveres.
We still beg for more prayers.
The further down this path of aggressive brain cancer we travel, the more complex all things will become.
The kids and I talked about how we could hardly remember Jon’s voice before his last year’s stroke. My heart breaks for all of us. I was so keenly aware of the way the medical staff watched over me.
Week by week, day by day, piece by piece, I am losing parts of who my husband is, and the kids’ memories are dulled by the scenes like we lived this week.
My kids are braver than they believe, stronger than they seem…and are suffering in silence as they smile and laugh to give Jon little worry about that all of this creates a challenge to their day.
Patience and love win.
I woke in my bed Saturday for the first time since early Monday morning when Jon had a dramatic experience that he hardly remembers—postictal state they call. I thank God he barely remembers most of it.
I’ll spare you all the medical jargon I have now come to understand related to seizures. My medical literacy has grown more than I could have anticipated.
Someday I may write a book on how to advocate for someone you love regarding many things, including navigating a diagnosis like a hearing loss for a child, supporting an aging parent as they decline, and being the voice for a husband as he lives with terminal cancer. This is all too much for one person. I ponder if God is leading me to write about how important it is for us to navigate these moments with trust, surrender, patience, a sound mind, and sound judgment while done with love.
Let’s just say it was a whirlwind week living at our newly found home away from home—another hospital stay. Another chapter in the book called Weathering Storms and Watching Sunsets From Hospital Couches.
I am exhausted.
I long for and desperately need some substantial healing rest. Never mind, we were set to hit the road for a much-needed respite this spring break week thanks to a stranger’s generous and caring heart. I will share more on this when the time is right.
Jon is exhausted and needs rest, too. This week took a lot out of him. He needs to regain endurance and strength.
Recovering from all we have weathered will take a long time. I am curious about time.
I am processing a lot.
I am finding space and words for many hard conversations. Come Holy Spirit. Please guide my words with love.
Sleeping on several uncomfortable couches with a different view this week is not where anyone would find healing rest. But one of those days, I did sleep a stretch longer than I had in a long time thanks to the incredible medical team and caregivers in the hospital who are not supporting just Jon but also me, his primary caregiver and wife. There are not space to write here all I want to say about those in our hospital room (and yes it became mine too) who cared for Jon and me this week.
I longed to be home with my kids suffering without their parents fully present in another uncertain time. I thank God for the unconditionally loving and supportive sibling relationship these kids continue to nurture. The big kids stepped in to minister to our young teens in the wee hours on the phone, all while they planned and packed their bags to hit the road again for another 5+ hour drive.
This is definitely NOT college life.
They are a safe and steady harbor for one another. So the big kids set sail for home again, even as they navigate their own stormy seas.
We had already been dreaming of the sea and the respite that would come in a few days with a plan to watch a sunrise or two on the beach.
As Jon received the medical intervention and was given tests galore to determine the cause of the ongoing seizures, we wondered if our spring break respite we have been planning for the last two weeks would come into view.
We were (are) hoping for some simple and ample rest away from the demands of living with cancer to watch a ball of fire sizzle on the sea as it ascends over the horizon and we inhale the salt air.
Though I could catch a few stunning sunrises and sunsets from various couches with different views this last week, I still wanted to be home.
“If you’re tired of fighting on your own
If you’re tired of feeling all alone
I’ll be your home
I’ll be your home.”P. LaRue, I’ll Be Your Home.
Aside from getting healthy enough to start the spring break respite trip, we wanted to get home to hold space to celebrate the birth of a joyful little bird with cake. We were not sure if that would be in the cards.
If it were not for our baby girl’s birthday this past Friday and the plan to hit the road this weekend, I am sure I would not have known what day of the week it was. I had to stop and count on my hands how many days had passed to remember what day it was. Just as Jon was being given innumerable neuro-checks, my cognitive ability was being examined by me.
The hands of time were blurred between the rising and setting of the sun and which room or hospital we were in after early arrival and a transfer at the end of one of those very long days.
An ER arrival in the wee hours, transfer, and admission to a new hospital after dark. At the same time, I begged for/ insisted on admittance beyond visiting hours; Jon needed me to be his voice. Prayers are sometimes answered when someone breaks (or twists) the rules.
Time passed during this stay as quickly as the multitude of the medical team would come and go, with many tests, conversations, and neuro-checks, I yearned to be at home.
I prayed for the upcoming respite by the sea we had planned. The longer we remained here, the chance we could go would only dwindle. Spring break is only so long.
No matter, I just wanted to be home.
I watched a few sunsets that splashed strokes of blue and orange in the direction of home.
In the last few months, a sunset, a sunrise, the glowing full moon, soft snowflakes falling, a warm breeze, or staring out into a brilliant blue sky is all Jon would need to marvel at the day.
Learning to embrace the simple things in life has been a respite from our demanding days.
Those views are far better than the storms we’ve endured.
Sitting in front of the ocean crashing on the sand, is where we all hope we can be and what all the doctors ordered.
We wanted to be home or better yet, in a home temporary home by the sea.
The truth is, home is where my heart is, whether in a hospital room holding Jon’s hand, on the beach watching the sunrise or seagulls ride the wave, or eating cake singing happy birthday to our baby girl at home.
By the grace of God and an amazingly compassionate team of medical professionals on our side understand the gift of healing at home or even by the sea.
When the medical minds came together and agreed the storms Jon weathered were calming, we were set free to head home. It was not a moment too soon.
As the stormy sky poured rain on our drive, I imagined a masterpiece sunset splashed across the sky, pointing us toward home; we listened to a few of our favorite songs from our playlist titled home.
We sang happy birthday to our littlest lady while we ate cake at home.
While that baby girl, the exclamation point to our family, loves to celebrate a birthday or open a gift, the best gift she received was having us all under one roof to eat cake.
After celebrating with cake, I had to step away to speak to our doc about the MRI findings, which showed more tumor growth and burden that likely explains this new seizure activity.
I am still processing all of this and searching for words that may come best after a respite (if we can get there) by the sea, inhaling salt air while watching a sunrise while eating more cake and writing about it too.
Would you pray for us? Please storm heaven and pray for a miracle, for comfort, for peace and strength we can take a short trip.
Home is my beginning and end.
Edited to add: I am so grateful to each and every person who has reached out sending messages of love, prayers, concern, support, and generous offers. I am completely humbled by all of it and the incredible life Jon and I have built with the love of so many around us.
I will leave you with some of the favorite lines to these favorite songs on my playlist called Home.
"Have you ever been driving down a highway looking at the sunset It'll make you forget all the troubles every day can bring Have you ever been staring up at the starlight Getting pretty close to midnight Sounds just like the wind singing your name Feels like home."-D. Holcomb, Feels Like Home.
"You are the sunrise waking my day You are the moonlight shining my way This is where I call home You are the fire warming my night With you I'll stay till the morning light This is where I call home This is where I call home Your love is like no other Your love is where I feel alive My safety and my shelter Your love is my home You are the harbor set on my shore You are the shelter from every storm This is where I call home I'll be your home."-The Light the Heat, You Love is My Home.
"Lift up your head Let it all start Today is the day you return to your heart Open your eyes Let it begin Today is the day we let the light in Take my hand we're going home I won't ever let you go Take my hand we're going home I won't ever let you go We're going home."-R. Kent, We're Going Home.
"Hold on to me as we go As we roll down this unfamiliar road And although this wave (wave) is stringing us along Just know you're not alone 'Cause I'm gonna make this place your home Settle down. It'll all be clear Don't pay no mind to the demons They fill you with fear The trouble, it might drag you down If you get lost, you can always be found Just know you're not alone 'Cause I'm gonna make this place your home."-P.Phillips, Home