For All You Give

A song popped up when I opened my music app last night that I hadn’t heard in several weeks.

For All You Give is the title of the song.

I hit play hesitantly.

I usually hear this song while driving to or from appointments with Jon by my side, wishing I was driving across state lines to somewhere we had hoped we’d get to and never have been.

This was the hope I held onto. Jon did too.

We’d talk about where we would go and where we have been as we traveled so many roads and years together. But getting home to watch the sunset from our front room (aka the room where we hang out) was the only place I wanted to be—home with Jon.

Cue the song…

“I wanna take you everywhere I go
Have you by my side
Take a walk ’round in every town
Drive across state lines
Like the sun sends a golden stream
In to our front room
I could be the same old light
For you.”

Hearing the first lines and music sent chills and tears in a way I did not expect. But it’s expected after the week we’ve had and almost 1000 days of this journey where I have been by Jon’s side and he by mine.

The song is on the playlist I mentioned in my blog reflection titled “Home.” In that blog post, I shared what was on my heart and where life was after a week-long hospital stay due to a seizure Jon had in our bed in the middle of the night.

Once discharged, we got home, and got Jon settled. Yet another hospital stay in the books.

Then we packed our car and crossed state lines to watch a few sunrises (and sunsets) by the sand and sea for a short but much-needed respite for spring break. Though the trip was unlike our summers and not really a break and much shorter than anticipated, we made beautiful memories by the sea.

By grace and generosity, we got to travel again and make that trip to the sea. As we drove over a few bridges, I took a few deep breaths as my usual playlist about home, love, and Giving All We had piped throughout our car.

I recently learned that the music I listen to is always the familiar and comfortable because sometimes those songs play on repeat. Listening to certain songs while on our drives has been a balm to our souls and a rhythm like prayers as we search for peace and hope. I am all about comfortable, familiar, and soft places to land.

It’s been a while since I’ve been driving to and from the city for appointments. The last time I traveled in that direction was a trip to the airport to drop off our college kids.

It’s been a week since we dropped the kids at the airport on Easter Monday, the day after another mind-bending, bedridden migraine for me, and the day Jon started to seem less than himself.

I observed, prayed, and wondered if I’d need to “grab a shower” and prepare my go-bag for another drive, ER visit, and/or prolonged hospital stay. Having to always prepare a go bag was causing curiosity and a few other emotions.

I am sure you will understand. I dreaded eating and sleeping (or not) on my uncomfortable couch or horrific chairs in institutional buildings.

In my heart, I knew Jon did not want to spend another blessed moment on the road, headed anywhere save for a trip to the beach, much less another night in an ER via ambulance or admitted to a hospital room for an extended stay.

I didn’t blame him one bit.

He has been giving all he has to give.

We have been giving all we can.

I keep hearing the song play in my head.

“For all you give
I’ll give it back to you”

“For all you give
I’ll give it back to you.”

Paperkites

My mind wandered to a 16-hour ER visit a few weeks back. Jon and I resolved not to share (until now) about it because it revealed nothing more than what we already knew.

It caused additional unnecessary exhaustion and stress.

It shed light on the fact that we no longer felt being in hospitals was quality of life for Jon or our family. It was hardly worth re-sharing anything about that ER visit. And it just was another feather in the PTSD cap I didn’t feel like recapping.

I stayed awake for nearly the entire night, unable to sleep in the most horrifically uncomfortable chair with my head slouched over the tray table on a makeshift pillow as if I had fallen asleep during class after pulling an all-nighter studying for a final. I definitely would have failed that final. I was awake for over 28 hours by the time we got home. I crashed on the sofa as my kids stood by with weary stares and teary eyes, caring for Jon and me again after their own long drive home once again.

They have been giving all they have to give. They still all have exams to study for too.

Where We Are

Thank God I have friends in high places and people on our medical team who know the desire of our hearts and support us wholeheartedly. They quickly got us in and out of that hospital. By “quickly,” I mean avoiding having to be admitted.

This rough ER experience prompted necessary organic conversations between Jon, me, and our kids. “The buck stops here,” he said. Organic seems inappropriate because nothing about our story is natural at this stage in our lives in any way.

The truth is that Jon was beginning to not feel much like himself, starting months ago with each new complication, ER trip, and prolonged hospitalization. While he wasn’t losing hope or his cheerful nature and still laughing like no one “should be” in this situation, he was becoming weary too.

He just never complains about anything.

I noticed a few things. I knew what we had discerned and discussed in the early days of this diagnosis for such a time as this. He knew he has given all he has, and he hardly has much left.

We have tried and pursued all that we could within the parameters of our life to fight this disease and live with dignity.

I knew deep in my heart that all this was wearing him down, leaving him frayed and tattered.

Trying to be brave and live this challenging, uncertain life with his “it’s a piece of cake” attitude was beginning to wear on him, and Jon knew it.

This was the start of many hard conversations about how to proceed and when we’d know what we needed to know to make decisions for better or worse, in sickness and health, till death do us part.

We treasure a quality of life with dignity and respect. I have shared that our entire journey of uncertainty has been about living life at the foot of the cross with obedience, grace, and love while searching for joy and peace.

“Jesus stood in the midst of his disciples and said to them: Peace be with you. alleluia.”

john 20:19.

We know that our journey on earth is limited for all of us, and ultimately our goal is to walk one another home through the narrow gate into the Throne Room.

Though we are tangled together, we are all just really passing through.

We all will take this path sooner or later. It is only a matter of time. As I have said since the beginning, only God is the keeper of our time. How we use that time is all we can control.

I hope we have served, honored, and loved well while giving God all the glory on this wonky, frustrating, scary, eye-opening, healing, loving path of living life where brain cancer was at the helm.

We give all we have to give.

We see the reality of what we were facing with a continually progressing tumor that is not responding to treatment. Still, we were and still have been given time beyond what was expected. We really never had an expectations.

Music and Car Rides

The last time I was in the car was when we arrived home after dropping the kids off at the airport. Silence and sniffles, rather than our favorite playlists tunes, were the music that filled our car.

Tuesday, the kids pulled into the driveway precisely 24 hours after our tearful departure at the airport with most of their dorm gear loaded on the roof and in the hatch.

More tears begin to flow—it’s so unfair, and they’ve already made their fair share of sacrifices in these last two years, too many for words here—they have been giving all they have, too.

This week was the most brutal sacrifice for each of them. They both had to give up something they had worked hard to experience. My heart has been breaking.

But they know where they want and need to be. And they can still be mad and sad about all of it. I am proud of how my young adult kids discerned, managed, and handled this journey. They are wise beyond their years. The young ladies are too.

While trying to manage a few complications and trying to justify another trip to the city for another MRI when my heart already seemed to know the truth, Jon and I made a very prayerful and informed decision (with the guidance of our beloved doctor and a few other supportive voices on our team) to begin Jon’s transition to hospice.

There is a sentence I have turned over in my mind for a week now. It’s news I knew I would eventually have to share, but I hate to have to type it. Jon has chosen to end all treatment and take the hospice route to manage and support the coming days.

The last time Jon walked upstairs to our bedroom was over two weeks ago. That hurts my heart to write and read. Jon was beginning to lose endurance and strength, yet he continued to endure and embrace each challenge with a smile. It’s not lost on me that I wrote about how my Lent journey, This is My Lent, was about focusing on my room/our bed. God is in the detail always.

Thank God we timed the purchase of the best recliner in the land of recliners—the Cadillac, maybe the Yukon XL version. At least its transmission and suspension didn’t fail apart like my beast—my Yukon. That’s a story for another day, but God’s timing was well-planned. I haven’t needed that truck, and by the grace of God, it has been fixed—extended warranties rock. Seems my car was weary too.

I gave the big kids the job of buying that recliner for such a time as this before they returned to school after spring break. They did a fine job choosing a comfortable and versatile chair for their dad, ensuring it would fit perfectly into the space and the decor of our favorite room where love hangs around.

Oh, and it was what Jon needed to give him a restful night’s sleep since he could no longer climb the steps. Jon and I spent evenings sharing laughs and tears, having tough conversations, and recalling beautiful memories for over a year in this room since he returned home from rehab in late October 2021.

We have spent the spent the better part of the last 17 months hanging out in this front room. Recently, he has slept a lot in that reclining chair—sleeping more than awake.

MRI’s and Time

Had things not been falling into place in this accepting, comforting, and peaceful way, with hospice to manage and support our days, we likely would be hearing the song, For All You Give, on our way to the city for our scheduled MRI this week.

The upcoming MRI that has been on the books and our minds since we returned home from the seizure escapades can give us data and tell us everything we already likely know about a progressing tumor. It’s progressing and causing challenges. I don’t need science to tell me what I already know.

It did not make sense to make the trip because we already knew where things were and where they were headed. Jon wanted to avoid making this trip too. Time is far too precious to be stuck in waiting rooms. That time adds up to hours on end.

This MRI can not tell us how to choose to spend our sacred time living our best life during these tender days.

Living our best life—peacefully and calmly—in the most challenging days with a life-limiting disease while life continues around us is the only way for us. The dogs are close to Jon. Can you imagine the comfort this brings to him, the kids and me. They won’t leave his side.

The gift of choosing hospice is as much about supporting the patient and the family through the end of life as it is about being given a soft place to land as your loved one journeys home. There’s no place like home for us.

While we feel much sorrow and shed many tears knowing what we face, we choose dignity, abundant peace, comfort, and rest. Jon is still as joyful as ever and continues to be filled with the gift of laughter lately. He has had no pain.

It is a sacred and holy space where the veil is lifted ever so slightly as peace, mercy, and grace guide our day. It is not lost on me the timing of all of this on the heels of Holy Week, Easter, and Divine Mercy Sunday, as well as several other Feasts Days of treasured Saints surrounding these days.

Perhaps in time, I can gather words to share where God has revealed He is present in every detail and even places I would have never considered. God IS in every detail of this journey like a perfectly woven tapestry.

What I Do and Don’t Know

I don’t know how each day ahead will unfold. I know Jon still lights up the room as he smiles or expresses utter joy as he breaks bread and eats whatever including cake is before him. This man loves his food especially those cheesesteaks and tacos.

I don’t know how much time we’ll be granted; I know Jon has defied all odds to this point, and I know God can do impossible things.

I don’t know how my life will look, but I do know God feels very close—His heart is pressed against mine while wrapped in His Mother’s mantle of protection.

I don’t ask why we don’t have that big miracle that we all prayed for and still pray for. We do have peace that surpasses all understanding, and the miracle is that we continue to live and love daily, and Jon will be healed and whole. Jon is and always was the miracle.

I don’t know why our family was asked to walk this difficult road, and I know overflowing grace fills the air like breath in our house.

I don’t regret a single step we have taken (or chose not to take) on this road; I know that opening the door, offering a place at the table, and modeling love and mercy only multiply love.

All You Give

“All you give, it comes back to you.” No truer words from my song.

For all I gave, all the love we have seen in this time, and all that Jon gave and continues to give on this journey, without a doubt, God continues to give back a hundredfold to me, to him, to us because we trusted him as we journeyed toward sanctity.

I don’t know if I will ever be more proud of the man I married. He is my hero. He is the kids’ hero, too. I will always be honored and humbled that I was trusted to walk alongside him on this difficult and demanding journey toward home.

Please continue praying for our family through these sacred, holy, sad, beautiful, and delicate days. It’s all perspective. We have so much grace and Divine Mercy surrounding our family. We pray a daily rosary in the morning and Divine Mercy Chaplet at 3:00 pm. Maybe you would, too?

My heart is raw and tender, my bones ache, my eyes are weary, and my feet are in excruciating pain—walking this road with old injuries is catching up with me. Some much-needed healing has already begun.

Still, my heart is full of peace and love that I know will be shattered into a million pieces but will be held together by my faith and trust in God like the gold glue of a kintsugi.

There are no magic words or advice on what we should have done then or now.

We were/are doing our best.

Jon is doing his best. He always does—over and above.

We always do our best to surrender to and follow God’s Will. It’s why we have peace and are surrounded by grace. We have been prepared with faith. We are Easter People.

We give all we had to give, and in doing that, in trusting God, and being obedient to carry this cross with patience, joy, and peace, so much is returned to us.

“I wanna take you everywhere I go
Have you by my side
Take a walk ’round in every town
Drive across state lines
Like the sun sends a golden stream
In to our front room
I could be the same old light
For you

“Like the morning is always new
I’ll give it back to you
Like the rain, it just passes through
For all you give
I’ll give it back to you

“I think about it like a man in need
Every time I’m gone
Wait to see you like a mile-long train
Is passing by your door
And my life is set around you now
Tangled up the same
And I will be
The one who calls your name

“Like the night comes black and blue
I’ll give it back to you
Like a road runs straight and true
For all you give
I’ll give it back to you.”-Paper Kites