Soren’s Story

Site created on March 18, 2018

Thank you for coming here to learn more about Soren's journey. He's 2 1/2 (now 3 1/2) years old, and he's a remarkable kid. 


Soren was admitted to Minneapolis Children's Hospital with a hemorrhagic brain tumor. It was removed, but it was determined to be a very aggressive form of brain cancer.  So Soren will be embarking on a long and difficult treatment.

This CaringBridge page will update you on the journey that Soren, and therefore we, must take. It will undeniably be sad and overwhelming. But we have promised each other that we will find beauty and joy in being together, no matter how hard that might seem right now.

We are honored and humbled by all the kind messages of support we have received up to this point. Please keep it coming. We will need it. 

Every child is special and a gift. Soren is no exception. He's a spark of silliness and passion in our lives. He's a joyful, energetic, and opinionated sweet little soul. You will get to know him as we share this journey with you. I promise you will be glad to know him.

Newest Update

Journal entry by Brad Dykstra

It’s now been nearly 16 months since I last wrote on Soren’s CaringBridge page. To be honest, I’ve been wrestling for months about whether or not I should post here again. This CaringBridge page is a sacred space - one filled with Soren’s life. Since we will have so many more years without him than we had with him, I have a fear that, if I keep posting here, this page will slowly become a page about Soren’s memory rather than a page about Soren’s life. 

 

This is a key difficulty in the process of grieving the death of a loved one. We wake each day to face a new combination of experiences that remind us of Soren's life, but are incessantly met with the reality of his absence. This is merciless and relentless. I am so sick and tired of spaces that used to be filled with his life eventually becoming replaced with emptiness and blurry memory. So I fear doing the same to this CaringBridge. However, each time I choose not to write, I eventually return to this point: Early on in Soren’s cancer journey, we committed ourselves to seeking love, soaking each other in, and sharing with others the truth we found along the way. We knew we couldn’t walk that journey alone, and you all were gracious enough to come alongside us. We are now learning the journey of grief is no different. We can only get through it with the support and solidarity of those willing to walk beside us. We have a few new ideas of how we might share this journey in the future, but those ideas will take time, energy, and money we don’t currently have. So in the mean time, we decided to reach out to you all here. 

 

This Saturday, July 10, will mark 2 years since Soren died. Two years.

 

The journey of grief is confusing and exhausting. Over the first year we struggled our way into new routines that felt foreign. We attempted to step through the necessary responsibilities of life while concurrently tending to the deepening wounds of loss. Once again, we were in a position where we had to rediscover what life looked like following another painful transition. We had become well-practiced at this throughout our cancer journey, but this time was different. The rules and expectations had changed, because for the first time, life was split. Through cancer, our goals were to stay connected to each other and grounded in love. This allowed us to discover an unending joy with one another no matter darkness we faced. However, once Soren passed away, we didn’t know what it meant to “stay connected with one another” now that Soren was no longer with us physically. We fumbled through Silvia, Alicia and I staying connected, but even when we did this well, life still felt (and feels) very wrong without Soren’s connection. The question of how to remain connected with Soren after death has been a complicated one, filled with constant, dissonant searching through what it means to actively love someone who is no longer present. Additionally, “staying grounded in love” remained deeply important, but now it introduced a deep level of pain and longing for something that had once been pure joy. We still longed to spend time with Soren, to actively remember time with him, and to honor his memory. However, this process, now called grief, seemed to compete with the rest of life. Love was no longer as easy as soaking in cuddles, adventures, and laughing. Instead, it took significant courage to face the pain and overwhelm that came with it.

 

Nonetheless, we worked hard to intentionally face this grief and weave Soren’s memory into our daily, weekly, and seasonal rhythms. We were quick to take time to cry, talk, remember, struggle, panic, adventure, sleep, and create in ways that worked to connect our hearts to his. We learned that whenever grief was not given enough space to exist, it quickly became suffocating. If we worked too hard, got too deep into a project, or simply didn’t acknowledge the grief, it would quickly overwhelm us. So giving grief the space is needed was very tiring but important work. 

 

During this first year, we also deeply wrestled with whether or not we should add another baby to our family. This part is difficult for me to write about and probably deserves a post of its own. Now is not the time to dive deeply into it. But we knew Soren really wanted to be a big brother. That idea excited him and he would have been incredible at it. We also knew how gifted of a big sister Silvia was and how great it had been for her. But we recoiled at the idea, as we had absolutely no desire to “replace” Soren, and feared letting another little human into our hurting hearts. However, we were aware of our ages (Alicia 38, Silvia 7, and me 40), and although we knew our hearts needed much more space and time to grieve, we didn’t want to wait too long if we knew we felt pulled to try. We had countless conversations about how difficult it would be to hold and care for new life while also holding and tending to the pain of death. But in the effort to “stay grounded in love” and apply the courage and love we learned from Soren, we decided to try. And, as many of you know, we found out we were pregnant in early January 2020, and on September 10, our beautiful 2nd daughter Maren Josephine was born.

 

There’s so much to say about the process of being pregnant while grieving, about facing the fear of loving another human after deep loss, about how amazing Maren is, and still how painful that can be. But again, those thoughts are for another day. 

 

March 2020 and the emergence of the pandemic changed life for everyone. Each of you has a significant story of change, and in many cases loss of some sort. And for us, the change effected us early on. For those of you who don’t know, Alicia is a Nurse Practitioner in the Medical Intensive Care Unit for a major hospital in our area. Her team is responsible for most patients with respiratory failure on a ventilator, as well as many other severely life threatening conditions. So she and her team have been the front of the front line in responding to COVID. Their work, and the work of their families, has been nothing but heroic. 

 

Seemingly overnight most the healing and stability we had been working towards changed and chaos ensued. For many of you, I’m confident life felt upside down and quite unstable. But for us, it largely felt normal. We had felt the fear of this instability many times in the recent years and had become practiced at responding. We were experienced in short term quarantine, sanitization, and even in processing the constant fear that something bad could happen; continuing life without any future certainty. In many ways, the early days of COVID felt more familiar than the life we were trying to get used to. So, we stepped into our well used survival mode and got to work. 

 

As we worked, the long term reality of what we were facing hit us hard. The unrelenting efforts of a pregnant mother working to save the lives of those stricken by the virus created another deep level of physical and mental burnout. The overwhelming increase in patient death faced by their team brought with it additional deep emotional weariness. The shift to distance learning, the expectation of a new sibling, and efforts to lead a strong yet fragile 7.5 year old through yet another threatening transition brought back a level of necessary yet endless presence and intentionality that we were not yet resourced to provide. In May, our South Minneapolis neighborhood wept with various displays of pain after George Floyd’s death. And for us, this all removed much of the space needed to appropriately grieve the loss of Soren as we struggled to simply make it through each day. 

 

As 2020 continued, and as Maren entered our lives, we dug deeper into ourselves to tend to a newborn, respond to the needs of the pandemic, to parent through yet another major transition, and to meet the most basic needs of our lives. However, many essential, long-term needs were pushed outside the margins. We were thrust back into parenting a baby - days filled with mental exhaustion and nights filled with sleepless snuggles. And so much of the work we had put into personal health and creating space for healing had eventually evaporated. We struggled to find ways to create the necessary space required for grief, which at times felt impossible. Now that the pandemic has eased somewhat, and Maren is a bit older, we find ourselves struggling to keep going. We are confused, weary, and disoriented. And we are deeply burnt out. 

 

Over the summer, we have been trying to sift through the reality of what we’ve been through. We have been searching through the rubble of what we built early on as parents, through cancer, and after death. We have begun seeking for the edges of a foundation we can rebuild our lives upon. And as we slowly move the broken pieces around, we continue to get glimpses of that foundation. Interestingly it’s the same one that’s always been there - still standing, just covered and messy.

 

This is how we know love to be true. Each time our reality changes, each time we are forced to rebuild, love for one another is still standing. It has not failed. We deeply love Soren and miss him to the center of our souls. We know that no matter the confusion we feel about how to experience that love, our love for him has not lessened. And his love for us echos all around us. In this season, love for him may be found largely within longing, depression, fear, and pain, but it is still love. Just like we promised him, our love for him will never stop. We will ceaselessly seek ways to remain connected with him, to honor his life, and to live out the truths we discovered in our precious time with him.

 

Our love for one another is still a refuge. It has looked messy and painful at times, but each time we return to it, we find the joy in sharing our time, experiences, discoveries, and laughs with one another. Alicia offers her unwavering tenderness, graciousness and strength. Silvia adds an unstoppable gratitude for family, an explorative heart that keeps us grounded in nature which comforts our hearts, and a pure love of laughter that will not let us sink only into sadness. Maren supplies easy smiles and laughter and proves to us that our capacity for new love is still alive. I give presence and a (usually) patient grounding in what we know to be true. Soren continues to provide us with an example of how to keep our hearts open through pain, and modeled how to unabashedly speak and show the love we have for one another. 

 

Maybe this is the point I need to hear. For decades I sought to create a contagious love - to build something that could be shared. But as I write this, I am wondering if my lofty goal was lovely, but misplaced. I’m now wondering if the constant transitions, pain, dissonance, and loss might be showing me something deeper. Maybe love isn’t something to be created. What if love is already here, but it’s just covered and messy? What if love isn’t something to build, but instead it’s something to return to? In the last several years, my family and I have been through the beauty of deep connection and the hell of soul crushing loss. We have sought peace and health, and we have been crushed by the intensity of pandemics, racial pain, and loss. Yet each time, there’s a deep love, based in gratitude and vulnerability, still next to us offering to be rediscovered. This is a love that doesn’t settle for simple affection or empty harmony. This love is stronger and so much deeper than that. It’s one which not only accepts struggle and difference, but it willing to compassionately engage them. It’s still found in our brokenness and does not require our denial of pain. No, this love patiently encourages us to tenderly acknowledge our pain - past and present. This love seeks compassion, understanding, and solidarity. This is the love my family needs; the love I need, and the love I still long to give to Soren. 

 

I no longer have my son with me, and I don’t know how to carry that reality for the years I have in front of me. Yes, this causes pain. Memories, even the joyful ones, often bring pain with them. I could protect myself from some or much of this pain, but then I would lose the only tangible presence of my beloved son that I have left. And my love for him, our love for him, will not allow that. It will not keep him alive, but it will keep him with us. So even now, two years later, we will continue our Saturday pancake breakfasts which create space for talking about our longing for him all together. We will continue Silvia’s bedtime routine that includes acknowledging how we missed him today. We will share stories of his silliness and sweetness with Maren. We will continue to say “Hi train!” (or police car, fire truck, ambulance, cement mixer, skid loader, crane, steam roller, dump truck, you get the idea), because we know he never missed a chance to say it, and it makes us smile. And we will keep him woven into our lives in so many other small ways. 

 

 

We are weary and broken. We are burnt out and disoriented. And after the last year and a half, I know many of you feel pain like this too, each for your own valid reasons. It’s been brutal. It’s broken trust, stability, and rhythm. It has strained even the idea of community and shown how quickly isolation can fill any void. We have all had to sit with dissonance. I am confident there were some unexpected, beautiful moments too, because the both/and we’ve explored in our other posts is universal. But I know the scales have been tipped towards pain. We are there with you. 

 

As we all move forward, may we each find the courage to sift through what has broken and find that a foundation of deep love is still standing. May we have the strength to hold our pain (past and present) and tenderly acknowledge it both to ourselves and others. May we find the deeper love that only pain can show us - a love that’s willing to struggle and cry out. And as we experience this love, even in pain, may we have the courage to share it with others.

 

Peace, love, and healing to each of you.

 

Brad 

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