I had cake today.
And we had ice cream cake yesterday.
I had cake another day this past week at the beach when we took a much-needed trip away from the demands of the world and the demands of brain cancer and caregiving. The truth is the demands of caregiving do not stop when we take a respite. We just take those things on the road.
Rest is the goal, but it is not always guaranteed.
We planned the trip over three weeks ago after the first hospital stay thanks to the incredible generosity of a stranger who, when I explained the purpose of our trip/journey and negotiated the rent, offered us the house rent-free as a gift to our family.
We were and are still undone by this gift, especially after having stayed in this home away from home for a few days last week.
It was supposed to be a more extended trip than we actually had. We were even given the kind and generous option to change the dates or extend our stay. It was just not in the cards after Jon’s most recent and more severe hospital stay and then learning about more tumor growth.
It is okay.
We will take what we can get. After the week in the hospital, we needed to be sure Jon was stable to travel.
After being admitted for seizures last week and PE’s last month, the conditions are certainly not great spring break trip of frolicking by the sea.
Thankfully ALL doctors and partners on our medical team “ordered” us to make this trip.
It was a short and slow trip with little expectation and some days with little sleep.
But it WAS something that Jon hoped we could do.
So despite all of the maneuvering and finagling and slightly extra work. We needed to go.
We are all glad we did.
There were no long walks on the beach or sunning ourselves in the sand.
We could hardly walk on the beach; it was blustery beyond belief.
But the six of us were gathered in one nest.
We ate from some of our favorite places among those that were open in this pre-beach season.
We were together.
We slept until the sunrise woke us, and then we fell asleep again.
Sometimes Jon slept longer. It makes sense he would—he is working hard to heal and fight. Brain cancer is not for the faint of heart.
We read books.
Some of us did schoolwork (love our homeschool life), and some took time to write.
I took time to be still and get lost in the rhythm of the waves crashing on the beach.
We talked about hard things.
We had long talks, and often silence won the moment.
I wish we had long walks, but being still and sauntering while searching for the perfect shells that captured our attention was enough for me.
We were together, and for a moment, we thought about nothing but watching the ebb and flow of the sea from our incredible view. I shared some rambling thoughts about our time away here.
And we had cake. There is always cake.
We have been back to reality.
Today the adult kids journeyed once again across the state.
I got to rise on this day, hug all of my people, and send them on their way, but not before enjoying cake.
Today is my birthday.
Last night, we had dinner (thanks to a generous gift from a treasured loved one) and an ice cream cake that was waiting in freezer for a celebration. We had the cake the kids planned to bring to the hospital to celebrate our baby girl’s special day when we were still uncertain of the day Jon would be set to leave his residence in the hospital. The nurse and hospital staff honored a special request to let Jon celebrate with all the kids.
Thankfully we didn’t need to celebrate a birthday in the hospital.
You may have heard we had cake last week for our baby girl’s birthday just after Jon was discharged from the hospital after a long, exhausting week.
Just before the college kids left today, a dear friend surprised me when she delivered my favorite cake and fixings for a perfectly healthy dinner.
We ate more cake.
I have received many beautiful messages today wishing me a happy birthday and offering continued prayers for Jon and our family as we journey through these difficult days.
The messages mean so much.
They are icing on the cake surrounding some tough days. Maybe the birthday messages and sentiments are “the cake” that gets us through these days.
Suffering and adversity
We have had some heavy conversations over the last week or so with one or two of my kids who have pondered why us, why this suffering.
Like the Gospel reading in John today, we see that our faith can grow through adversity.
I know that in our life, through adversity, our faith has grown.
I listened to Father Mike Schmitz’s homily for today. He said, “We may not be responsible for the cards we’ve been dealt. We are responsible for how we play those cards. You may never know why you are going through what you are going through. But the most important question is not why I am going through, but what am I going to do with it. The question isn’t who’s fault is this, but what am I going to do with it? What can I do with this? How can I use these days?”
Father Mike is really on to something.
I have seen this truth in Jon’s life, my kids’ lives, and my own.
We get to choose how we play the cards from the hand we have been dealt.
We get to choose to respond to the adversity and challenges we face and the crosses we carry.
Somedays, I certainly do not get it right.
Somedays, I have said way too many four-letter words.
Somedays, I can’t meet the expectations of others, and boundaries force discomfort. I am learning to let go of expectations, mostly of myself. Instead, I am giving lots of grace and mercy.
I have cried, maybe wailed, and been silent in my suffering.
I have raised my voice.
I have expressed justified anger in challenging conversations and felt freedom for having shared hard truths.
I have honored Jon.
I have cared for him.
I have loved him well and stood by his side as we have journeyed in sickness and in health.
I have nurtured him and our children through this trial and tried to be a beacon of positive light, not for accolades from the world, but only for the love I see in Jon’s eyes when he looks back at me as I care for him. While it’s nice to be noticed and receive praise, this trial has taught me to detach from what the world thinks of me. I have come a very long way.
The peacemaker in me has come to honor my husband’s wishes, no matter what, who is fighting valiantly and with incredible hope against hope.
I told a nurse recently how incredible Jon has been throughout this journey, and he has never complained. Then I thanked her for her help.
She responded: “You both make our job easy. We want to fight hard to support both of you.”
In the hospital over a week ago, a doctor (well, several did) told me she was grateful I advocated for Jon in a particular and very necessary situation. His health and well-being, and remaining stress-free life, are helping him stay strong when he gets weak.
In this life, if all I do now is lay down my life, my rest, my fear, my worry for Him—Jon and Jesus—and for my kids to the capacity they are willing to accept, I’ve done it (my job) right. I surrender all of it.
Someday I may share more about what I have gleaned in this time and how we navigate our children through these difficult moments by not telling them how to think, feel or act. But now, may we remember our job is to support them unconditionally and to guide them on how to discern, decide, grow, learn, and choose independently. That is the most loving thing we can do for them. It’s how they learn to respond to adversity and choose how to live with cards they have been dealt.
While I am not sure I will ever truly understand why we have been chosen to walk this difficult path, I know for certain we continue to see gifts. I know because of the stories others share when they read what I have shared so personally and vulnerably and when we encounter others along this long windy path. The slightest glimpse of our story I share here can hardly explain the magnitude of all of it.
Like Father Mike Schmitz says, we can choose how we play the cards with the hand we’ve been dealt.
When I look at the hand I was dealt, and the many challenging moments in my lifetime, I choose to learn and grow from each moment, especially when I don’t get it right.
Some things will have to take a back seat or be lost in the shuffle of all of this.
Prioritizing is key.
It’s God, Jon, kids—in that order.
That is what brings me the most peace while navigating the stormy seas.
Christe lux mundi, qui sequitur te Habebit lumen vitae, lumen vitae I am the light of the world, says the Lord; whoever follows me will have the light of life.-John 8:12
Stormy Seas with a Glimmer of Hope
Every day I applaud Jon for choosing to play his cards right and for picking the path where light guides the way, staying positive, and choosing hope.
He has every reason to choose a different path or way.
He is not bitter.
He is not angry.
He has never asked why me.
He certainly does not believe he did anything wrong to deserve this. There is no one to blame for this.
He may be curious and hurt by some things that do not make sense— choices and actions he has witnessed while he has journeyed through this. It’s hard to not be curious about things like this. We are all human. We all live with wounds. I encourage you to listen to the entire homily from Fr. Mike on this. It may offer you some wisdom, too.
While some moments and days and frustrating things are more difficult to process than others, Jon focuses on life-giving things and keeps his eyes fixed on God.
Like the many messages I received today have said, this isn’t how I ever expected my life to be today, for my birthday, last week, last year, or the year before.
I have the authority and capacity to choose how to wake up and encounter these days. Without a doubt, we face harsh realities of uncertainty these days, but I would much rather do my best to embrace them with all the truth, beauty, goodness, peace, and love I can.
It’s the way God wired me.
I am grateful for the sacred time with my family last week as we watched the rhythm of the sometimes stormy and sometimes calm sea.
I am grateful I woke up today, on my birthday, to the sound of coffee beans grinding and the smell of bacon cooking (thanks to my son, like father like son) and to a cascade of balloons dazzling our kitchen (thanks to my girls.)
I am filled with overflowing gratitude, joy, and love that I could celebrate another birthday with Jon and my kids. I do not take a moment of this life for granted.
So for me, I choose how I play the hand of adversity we have been dealt
today, I got to have my cake and eat it too.
Life is short. Eat the Cake.
May we take the hand we have been dealt, our adversity, and make our act of faith stronger than the last one.
May we choose to be a beacon of light in a world that wants to focus on the dark.
May we have our cake and eat it too.
I am so grateful for the birthday calls and messages I received today. They have filled my heart with so much love and peace. Please give me grace if and when I don’t immediately respond. I am doing my best to stay in the moment with Jon and my kids.
It’s where I get to give Glory to Him.
It’s my cake.
It should be no surprise to me the Psalm in the mass readings today is Psalm 23. Given my mom’s love, my lifelong connection to that verse, and our recent return from rest, it feels very much like God and my Momma are both winking at me today too. God always sends me gifts like this.