Laura Sobiech's Blog

Three Lessons Zach & His Battle with Cancer Taught Me About How to Survive a Pandemic

When my son Zach was diagnosed with osteosarcoma (bone cancer) in his left hip at the age of 14, his life became a lot like our pandemic world. Almost everything changed from how he did school (classroom to on-line classes), to the people he spent time with (friends to nurses and doctors), to where he lay his head at night (home to hospital).

During his 3 ½ year battle with cancer, Zach taught me valuable lessons about how to do life when it becomes a struggle. Here are few of those lessons.

Do things you love even when you’re miserable and scared (social distant and safe, of course).

My husband Rob and I picked Zach up from school one afternoon to take him for an MRI. He’d been in pain for a few months and physical therapy wasn’t helping, so it was time to figure out what was going on. After an injection into his left hip with a nine-inch needle, Zach had to lay perfectly still in a raucous MRI machine for an hour. When he emerged, he looked like a cat who’d been dunked in water. He wasn’t happy.

Zach sat across the waiting room from me when the doctor called on the lobby phone. It’s a tumor, it’s bad, it’s going to be a hard year, I heard the doctor say. My legs went weak as I walked across the room wondering what words I would use to share this devastating news with my son.

“They found a tumor. We don’t know what it is yet, but it’s not good.” I said. Zach turned his face away and did his best to hold back tears.

We returned home that evening around dinner time and as I sank into a chair in our living room, Zach ascended the stairs from his bedroom his guitar slung over his shoulder.

“I’m going to my guitar lesson,” he said as he walked out the door with his older brother. I watched as they hoped in the car and drove away.

Stunned, I admired Zach’s refusal to let the devastating news hold him back from doing the thing he loved. Right from the beginning he was determined to live life even when it was heavy and difficult.

Zach taught me how to put limits on how much of the chaos of the world I allow into my life. When I get stressed and distracted, I make changes that allow more room for the things I love most like my family, good books and meditation.

Be grateful no matter how hard things get.

It was Zach’s fifth chemotherapy infusion, and we would be in the hospital for at least three days. The hospital was crowded so we needed to share a room with a young boy, around 9 years old, who also had osteosarcoma. With just a curtain to separate us, we could easily hear this boy and his mother working on homework together.

As we listened, Zach said to me, “Mom, if I had to die so that little guy could have his childhood back, I would do it.” Rather than focusing on what he’d lost – carefree teen years – he was choosing to be grateful for the carefree childhood he’d had.

My heart filled with an unnamed emotion of both heartbreak, joy and immense love that squeezes and swells a parent’s heart when their child, despite their suffering, chooses gratitude.

Zach taught me that no matter how much we are suffering, there is always something to be grateful for.
Click To Tweet

Zach taught me that no matter how much we are suffering, there is always something to be grateful for.

When I find myself frustrated and impatient with the circumstances in my life, I’m happier when I refocus on all that I have. It helps me keep perspective and changes the tone of my whole day.

Don’t let fear stop you from embracing the adventure of life.

About a month after we found out that Zach was terminal, he was asked to do an interview for a radiothon fundraiser. He saw it as an opportunity to do something meaningful for other kids who would be diagnosed in the future, so Zach agreed to participate.

When the radio station found out that he played guitar, they asked if he would play and sing a song that they could air along with the interview. Zach was on board; the only problem was he wasn’t a good singer.

He was nervous, and I was worried. So, on the way to the recording studio, I told him it was no big deal, and he didn’t have to do it. 

“Mom,” he said, “If I don’t do this now, when am I ever going to get the chance?” He had a look of determination on his face.

If Zach had listened to me and forgone the opportunity because he didn’t think he was good enough, the world would have never heard his song “Clouds.” It was that recording session that led to “Clouds” being played on the radio for the first time and the video of the song going viral.

Zach taught me that big things can happen when I have the courage to step out of my comfort zone.

I try not to let my own self-doubt keep me from sharing what I have with the world. Now, when doors open, I do my best to walk through them. And if they close, I take the time to reflect and meditate to prepare for doors that may open in the future.

Life can get turned upside down at times. But we all have a choice about how to do this thing. We can decide to muddle through with an attitude of despair, sadness, and fear. Or we can choose hope, gratitude, and courage and maybe even make the world a little better for it.

Let Nothing Disturb You

“Let nothing disturb you, let nothing disturb you, let nothing disturb you,” I chanted in my head as I stepped out of the kitchen and into the garage to call my husband Rob with the news.

“It’s in both lungs,” I uttered when he answered his office phone.

“Okay,” he said, “I figured it was.” Rob guarded his heart by preparing for the worst outcome when it came to our son Zach’s bone cancer. “Are you doing okay?” he asked.

I tended to hope for the best – the chemo was working and scans would be clear, so it took me a little longer to steady myself when the bad news came — and came often during Zach’s battle. But I was getting better at it with each blow; I was learning to trust God instead of fearing the uncertain future that lay ahead.

“I’m good,” I replied. “God’s grace will get us through. It has so far.” There was a peace that came with the words.

Over the years of Zach’s battle with cancer I had learned that detachment, the spiritual exercise of letting go of the created in favor of the Creator -the finite in favor of the infinite, was essential in learning to trust God.

As physical beings, we easily become attached to things that bring us comfort like our homes, possessions, financial stability, relationships, time, and our reputation. While these are all good things, they become an obstacle to trusting God with our lives when they become the focus and the end goal in life. Our attachment to them blocks God’s grace from entering our hearts and transforming them.

I wanted to have a big family filled with healthy children. I liked having two boys and two girls who each brought their own secret sauce to our family and I looked forward to the day when each would grow into adults, make their mark on this world and have children of their own.  

My greatest fear was to have a child die because I knew I didn’t have the strength to survive that kind of a loss and would end up broken.

Then Zach was diagnosed with a deadly bone cancer and I was forced to make a decision: I could choose to tighten my grip on how I thought my life should look and fall into despair when it was taken away, or I could choose to let go of my life and allow God’s grace to transform it into something completely different.

I chose to let go and every day since I wrestle with making that same decision over big and small things. What am I going to hold onto and get angry over when things don’t go my way? When I find myself getting tense, is it because I think I’m in control? What is it I’m afraid to lose? My reputation, how I look, financial stability, my time?

This poem, written by St. Teresa of Avila, a Spanish nun who lived in the 1500s, has become my mantra and was especially comforting in the last years of Zach’s life.

Turning our attachments over to God is almost always disturbing, frightening and heartbreaking. And it’s hard work that never ends. It means being content when a barking dog disrupts a quiet morning on the patio. It means letting go of an argument in favor of backing off and praying for humility and understanding. And it means trusting God to give the right words of comfort to share with your child when he tells you he’s afraid to die.

When we let go of our plans and make space for God’s grace to work, we can be certain that we will lack nothing.

St. Paul writes about this mystery in his letter to the Philippians. “…for I have learned, in whatever state I am, to be content. I know how to be abased, and I know how to abound; in any and all circumstances I have learned the secret of facing plenty and hunger, abundance and want. I can do all things in him who strengthens me.” (Phil 4:11b-13).

Zach died just days after his eighteenth birthday. That wasn’t my plan for him or for myself. But God, through His grace, strengthened me and transformed Zach’s suffering into something beautiful that touched millions of lives across the globe.

I still hold on too tightly to things and plans that get in the way of God’s grace, but I’m still chanting those beautiful words, “Let nothing disturb you, let nothing disturb you, let nothing disturb you.” And every time God shows up and reveals to me that He alone suffices.

Faith

Grief

Hope

Uncategorized

Somehow

Hey Zach,

May 20th is here again, and all the memories come flooding back.

It’s funny – somehow you never feel very far away.  You stay close as I travel through time without you, like a locket full of memories and feelings. You’re not a heavy burden, but a faithful companion who keeps me company on all of the crazy and wonderful adventures you left us.

It’s been five years since you died, which seems like a lot of time, but in my mind and in my heart it feels like no time at all.

I see the passing of years in our family.

Alli got married to Collin; you have a nephew named Finn and you’ll be getting another named Frank, soon (I like to think you’ve already met the little guy). Sam graduated from college, works full-time in science (bet you would’ve guessed) and lives on his own. And, Grace graduated from high school and started college last fall. She’s figuring life out and has a nose ring and a tattoo now. Their lives have moved forward.

Dad and I are different now, too. I like to be alone more, spending time with my thoughts; and Dad has learned to enjoy the simple things, like the sunrise when he visits your grave. We have grown older and a wiser. We try to focus more on what we have than what we have lost.

I see the passing of years in your friends, too.

Each holiday at church I see them walk in with their families, girlfriends, boyfriends, fiancés and spouses. They aren’t 18 anymore, the age you will remain forever. They’ve grown to be men and women with careers, lives and futures to build, leaving proms, frat parties and part-time jobs in the past.

I see the passing of time in your legacy.

Remember that wall we used to walk by every time you checked into[image error] the hospital? The one with all the people’s names who raised a bunch of money for research? Your name is on that wall now! The research fund you started has raised over $1.5 million dollars, and there is a new trial for kids who have run out of options. Because of you, Zach, these kids might have a shot at life that you didn’t.

People from all over the world still reach out to me almost every day to tell me you have changed them in big and small ways. Some say you inspired them to do simple things like look for joy in daily life; others say you inspired them to make radical changes in their lives like choose a new career path.

And, there are executives in high places in Hollywood who think your life is worth sharing on the “big screen.” Crazy. A movie about your life! Cool beans, huh Z?

A lot has happened since you died. So, it should feel like a whole lot of time has passed since you left us. But it doesn’t. Because, somehow, I still feel the warmth of your last breath on my cheek as I kissed you goodbye.

Love you, babe.

Mom

I Went There Once

I went to that place once. For just a moment, I thought about what could have been, and I almost lost every spark of joy I had left. Despair almost won.

It was mid-morning in April of 2013. I was sitting at the kitchen counter as Zach crutched through the room to the door that leads to the garage. For the first time in days he was leaving home, and for the first time in several weeks, he was headed to the high school. He’d decided at the end of February to stop attending classes because he wasn’t feeling well enough. And, knowing he only had weeks, maybe months, to live, school just wasn’t a priority anymore.

But this day was important. Zach’s favorite biology teacher had promised to play guitar for the class, and Zach, sharing an interest in music, was determined to be there.

“See ya later,” Zach said as he passed me.

He was happy and had a big grin on his pale, emaciated face, something I hadn’t seen for several days.  He was rail thin and his hair was patchy and sparse, the ravages of years of chemo quite evident. The bone cancer that just wouldn’t be killed ate away at his pelvis, filled his lungs and caused him intense pain. The medication to help dull the pain made him tired and nauseous, robbing him of his normally upbeat and cheerful disposition. I missed his toothy grin. It seemed we’d lost that part of Zach forever.

“Bye hon! Enjoy yourself,” I said in a cheerful voice as he reached for the door.

And for a split second I was transported to a different life. I imagined Zach, strong and whole. He had a head full of thick blonde curls, his shoulders were broad and full of strength and his long legs were sure and steady. He wore a white and red Stillwater Ponies letter jacket full of patches for various sports, and he had a backpack loaded with books slung over his shoulder.

I saw a boy who had a lifetime ahead of him, not the boy who would be dead in six weeks.

[image error]Zach, February 2013 at the Varsity Theater

The crack in my heart that had formed over three years earlier when Zach was diagnosed threatened to break wide open and spill out every drop of hope and joy I had managed to hold onto. Waves of pain surged through me and I sobbed.

“No,” I stopped myself. “Not doing that. That isn’t our story, and it was never going to be our story.”

It was agony letting go of the life that cancer stole from us. But, I knew if I didn’t, cancer would steal this one too.

I changed my focus back to what I had:  a son who, through his suffering, taught me what faith and courage really looks like, and a family who taught me that I can live through anything with their support and love.

I learned that day that I had a choice. I could allow myself to go down the road of loss, count each one, and feed despair to my broken heart. Or, I could choose to remain in the present of the precious life I had been given and fill my heart with gratitude for what I had.

Watching Zach physically fade was gut-wrenching and heartbreaking. But, what the disease took from him was replaced by something more powerful than muscle and more beautiful than his grin. The disease helped form Zach into a young man who understood that pain, suffering and loss don’t have to rob us of love, and that true happiness doesn’t depend on physical strength and beauty.

Zach taught me that joy and peace don’t have to depend on what is happening  to  you. It comes from what is happening  in  you.

 

Pumpkin Pie without the Nutmeg

Eight years ago, on a cold and dreary November day, Rob and I picked Zach up from school to take him to our local hospital for an MRI. We wanted to find out why he was still having pain in his left hip after two months of physical therapy. We thought it was likely something simple, like a torn hip flexor. But it wasn’t simple. It was a tumor.

The word “tumor,” spoken aloud by one doctor, changed our lives completely and forever.

I think about that phrase – our lives changed completely and forever, and I ask myself, is it true? Did our lives change completely and forever? Were there some parts of life that escaped the numbing touch of cancer? After four and a half years without Zach, I’ve decided the answer is no.

Much about our lives looks the same as it did before: I am still married to Rob, we still live in the same house, practice our faith and prefer comfy nights at home by the fire rather than nights on the town. But it’s all different now; not like the complete devastation of a nuclear bomb going off, but more like a sumptuous looking Thanksgiving dinner with each dish missing an essential flavor.

[image error]

Our lives are like pumpkin pie without nutmeg, green bean casserole without the fried onions on top and Champagne without bubbles. It’s not that we don’t have sparks of joy in life anymore – we most certainly do. And, we probably experience them more than most people do. It’s just that we’re missing the key ingredient that made “the Sobiechs” the Sobiechs. Our lives were sweeter when Zach was here.

But, I’m okay with reminders that life is different now. I’m okay with sitting down at the dinner table with my family knowing that our essential ingredient, Zach, is missing, because it is in the missing that he feels closest now.

I never want to lose the ache of losing him because that is how I care for Zach now.

After Zach died, a friend shared that he believes the strong ache of missing a loved one means the person’s soul is close. I think he is right.

So when I feel that deep, painful ache of missing Zach, I thank him for remembering his mom and for coming to visit.

And I let him know that the tears are okay, because if I cannot have the sweetness of his physical presence anymore, I will gladly take the saltiness of his spiritual visits.

A Gift That Never Comes Too Late

When you lose someone close, it’s the memories that bring them back to life again. The holidays are particularly hard, so when my heart aches for Zach and I need to feel close to him again, I put on my headphones, tap on a playlist of songs from when he was alive, and I travel back to better times when he was still here. I replay the memories much like I replay the songs, both are well worn and loved.

But the thing about losing someone is that you not only miss their physical presence, you miss having new memories to draw from. There will be no more new notes for your mind to dance through, no more new lyrics to delight in. Just the same old album on repeat. At times you find yourself picking up the album, but then setting it back down because you know there is nothing new to bring you comfort, and that fact just makes you sad and opens up a whole new chapter of grief.

This is the time of year when families come together, share in the joy of the season and create new memories. For families who have lost a loved one, the hole that is left by the one who is missing becomes even more evident and the sadness deeper. But don’t mistake that sadness as a message of wanting to forget. The greatest gift that you can give to someone who has lost a loved one is the gift of a memory. Some of my favorite memories of Zach are ones I wasn’t even present for.

I remember Zach making snow angels with his girlfriend, Amy, because her neighbor wrote a blog post about it. I remember how he consoled a girl who he found crying in the hall at school because she stood in line at his visitation just to tell me about it. I remember how he drove 150mph in a Nissan GTR down highway 94 because his friends finally ratted him out several months after he died (I’m guessing there are other secrets they are sworn to keep that may never get confessed). There are other memories like these that I cherish and will be forever grateful to those who shared them with me.

This holiday season when a random memory of a loved one who has died pops into your head, maybe instead of tucking it away on a dusty shelf in your mind, you could jot it down in a card or an email and send it to someone who will treasure it. Because the gift of a memory never comes too late and it never gets old.

The November of Grief

November is a hard month. It’s the time of year in Minnesota when the cold winds of winter blow the brilliant color of October away. The sky turns from vibrant blue to thick clouds, and the darkness of night comes early and the sun rises late only to reveal the harsh lines of bare trees and faded flowers. It is the time that reminds us of what was and of what is yet to come.

Grieving for a child who has died from cancer is like living in a prolonged November.

It starts in the days that follow his funeral. You see the evidence of his life all around you. You find a hairbrush with his dark blonde curls still in it and you hold it for a while then place it back on the shelf. You pick up from the bathroom vanity the toothbrush he used just days ago and you think, I should throw this away, but you can’t, so you put it back in the cabinet. You decide not to wash the clothes in his dirty clothes basket because you don’t want to lose his scent, it is too precious. And you make his bed, but you know it will be a while before you can sit on it without remembering his last breath. You go through his school backpack and look at each homework assignment and run your fingers across the chicken scratch that was his handwriting, and you throw some of it out, but you keep most of it.

Time goes by and the cold winds settle down. You get used to living in the grayness and you get used to the chill in the air. You can walk by his room without crying, but you still can’t go in without tears. You learn to smile when people talk about him and you figure out how to answer questions like, “How many children do you have?” and, “What are their ages.” You look through his picture album and you can laugh through the tears.

Sometimes the clouds clear and the grey gives way to sunshine. Your heart is lighter despite the fact the trees remain bare and the evidence of summer is frost covered. You can throw the toothbrush away after holding it to your cheek one last time, and you sit on his bed and remember the good times when he was just a kid and not a kid with cancer. You learn to get up from his bed and walk out of his room before the memories of his last moments fill your mind and flood your eyes with tears. You learn to tuck those memories away for later.

And then, one day, you wake up and the ground is covered with fresh snow. You leave November behind. You know the winter will be cold and long and it won’t be easy. There will be days when the wind will whip and the chill with pierce; but you know spring is coming. A baby is on the way who will never know his uncle, but you look forward to the day when you can share the stories. And you are grateful for the life that was and the stories that will be remembered and shared for the years to come.

You know the grey of November will happen again but that’s okay. Because just like the seasons, this cycle of grief will pass and spring will come once more.

They Should Have Fed Him Broccoli

[image error]When Zach was diagnosed with osteosarcoma almost seven years ago, I wondered why? Why did this otherwise strong and healthy boy – a boy who had been to the doctor only once in the previous three years – get bone cancer?

Other people had the same question.

“They should have fed him more broccoli.” One woman said after Zach was diagnosed.

When I heard this, I remember thinking, I’ve been feeding him broccoli since before he could even chew! Bone cancer doesn’t give a @#$% about broccoli! I felt judged, angry and annoyed.

Why do we do this? Why do we serve up answers we know we don’t actually have?

I think that sometimes in order to keep the crazy away, we pretend it can’t touch us.

We live in a chaotic world where we trust our outcome based methodology. We find great comfort in the belief that the right foods, the right parenting style and the right education will equal healthy and well-adjusted children. We sooth ourselves by believing we can protect our children from all the suffering of this world. Then, when the chaos gets a little too close for comfort, we turn to unreasonable prescriptions we anxiously spout off for the unfortunate ones, and we convince ourselves that it can’t possibly happen to us.

The truth is, it most definitely can happen to any one of us no matter what our methodology. We are all just one chaotic cell away from being one of “them.”

But, it’s not just childhood cancer families who experience the “should haves.” It’s anyone who experiences a crisis. What do we think when we hear something tragic on the news. A house burns down because a candle was left burning…They should have put the candle out. A tragic car accident happens and a father of four dies…He shouldn’t have been driving in this weather. A child falls into a gorilla cage…She should have never taken her eyes off of him. A child is diagnosed with cancer…She should have fed him more broccoli.

Yes, these things terrify us. But, if we really want our world to be less chaotic and terrifying, then we need to stop pointing fingers or offering up meaningless platitudes. We need to change it.

And we CAN change it.

Before Zach died we set up a fund to raise money for research in order to find real answers about why he got osteosarcoma. In less than two years, the research team is on schedule to publish fifteen scientific papers communicating their discoveries and have developed research/treatment partnerships with two pharmaceutical companies. The team is also on track to field clinical trials to test new and better therapies to treat this disease.

So, why did my kid get osteosarcoma? I don’t know yet. But I do know this disease has been around for a long, long time and it won’t stop taking lives until we seek better answers. And I know for certain it wasn’t a lack of broccoli.

I Am Not Enough

In my old life, a busy day consisted of working at a part-time office job, coming home and cleaning the house, then making dinner and running kids to various activities and making sure homework got done. Some evenings I would work a second job, I’d come home and my pager would go off, and I’d head out the door to the fire station. Life was busy, but I knew my place in this world, it was comfortable and I loved it.

Then cancer happened.

My busy life with lots going on became laser focused on taking care of my very sick child. I spent days in the hospital by his bedside tending to his needs, but mostly just sitting with him so he wouldn’t be lonely. I put my energy into reading everything I could find about his disease and the treatments. When I wasn’t by his bedside, I was at home doing my best to care for my other children so they wouldn’t be lonely. Or, I was at work just trying to feel normal. Life was chaotic, but I was content knowing that I was doing exactly what I was supposed to be doing – caring for my family.

And then Zach died, Alli got married, Sam graduated from college and Grace started high school.

Now, I meet with researchers and read through osteosarcoma research updates, I fly across the country to share our story with children, moms and dads, professionals, healthcare providers and priests. I read through contracts for music deals, movie deals and speaking engagements. And I spend time with families who are fighting the beast or who have lost children to it. I meet them in the darkest and scariest times of their lives, knowing I can’t make it better, but can serve as an empathetic witness to their suffering. I have a busy life with lots of moving parts that are at times difficult to keep track of, and sometimes I wonder if I am enough.

Am I smart enough?

Am I brave enough?

Am I energetic enough?

Am I outgoing enough?

Am I spiritual enough?

Am I strong enough?

Am I enough?

And then I remembered the truth; I’m not enough. But it doesn’t matter because that’s not the point.

None of the heartbreaking and beautiful stuff that has happened to our family these past several years is about me making things happen. It’s always been simply about doing little things with great love wherever life leads me. It’s about stretching myself to do things that terrify me in the hope that it will make the world even a tiny bit better. It’s about tackling things in which I am no expert, at the risk of looking utterly ridiculous, in order to further a mission I believe in. And it’s about offering what I have, and who I am, despite my imperfections and weakness to serve those whom God brings into my life.

My life is not comfortable anymore, and sometimes I don’t know my place in it, but I have, nonetheless, come to love it that way.

And Life Moved On

Last weekend I was feeling the contentment of having a day with no plans and that I could spend as I pleased. The hint of fall in the air gave me a hankering to start up our “Saturday Soup” routine again; a routine that gives way to grilling on the patio in the spring. As I searched the pantry for the soup ingredients, I was thinking about how many years we have been making soup on Saturdays and it suddenly hit me – Zach never knew this routine. We started it after he died. Life moved on.

Seven years ago, Zach came home from a run and his hip hurt. And life moved on.

Two and a half months later, Zach was diagnosed with osteosarcoma. And life moved on.

Six and a half years ago, Zach had his hip replaced. And life moved on.

Six years ago, Zach’s cancer spread to his lungs. And life moved on.

Five years ago, Zach’s cancer spread to his lungs again. And life moved on.

Four years ago, Zach’s cancer grew in his lungs and spread to his pelvis. And life moved on.

Three years, four months and 15 days ago, Zach died. And life moved on.

Three years ago, we started making soup on Saturdays. Our lives moved on.

There are moments in the middle of the moving on when something as mundane as opening the pantry door unexpectedly reminds me of his absence and blasts me like a sudden freezing cold wind. He’s not here, and sometimes the ache is so bad, I just need the comfort of some homemade soup so that life can move on.

Peace,

Laura