Saturday, November 29, 2025

Gratitude & Grief : Home Sweet Minnesota

Gratitude and grief. They are born out of change. So we hold our breath - hoping that we can live in the moment of suspension between when we take a breath into our body and when we give it back to the world. It’s in that moment of suspension that it feels as if the world stops. It’s there that change cannot find us.


But if we hold our breath for too long our lungs begin to burn - aching for a sip of that life-quenching oxygen. A breath by its very nature requires us to change. The art of breathing is built upon it. So, why is it so difficult? 



My heart is heavy with grief as I write these words and fight the building lump in my throat. It is the season of gratitude and it is not lost on me. For I am a true believer that there's always something to be grateful for even when your heart is grieving. I am grieving the life I’ve been so blessed to be given for the last twenty years: a home and place that represents all that makes me grateful today and every day. That's what makes this change hard. I have been catching myself holding my breath a lot lately, like I can't quite let it go because I am fearful of what will come next. Maybe if I never let it go nothing will ever change. The people I love so dearly. A community to which I feel we belong. Our house - the place we found just four years ago that truly feels like "home". This city, place, and all its people have seen us through a lot and they've loved us despite all of it. My heart is aching with gratitude and the deep love I feel for all this city represents to me. 


On December 5th, Mark, I, and our four dogs will make the move to a little city in Minnesota called St. Peter. It is three hours away from our current home in Sioux Falls, SD.  You might be wondering why this sudden change. Well, for a number of reasons. After quite the last year of cancer treatments, CF hospitalizations, and other medical complicatíons Mark and I feel it is best to be closer to my healthcare center in MN at the UofM in Minneapolis. Instead of the 4.5-5 hour drive to monthly appointments, sometimes more frequently, I will only be an hour's drive to my clinic and doctors. This move makes more needed healthcare more accessible and when I am in-patient Mark can more easily visit on a given weekend. And, as we all continue to know, CF is a progressive disease that somehow still doesn't want to leave me alone or go away even with major milestone drugs like Trikafta and Alyftrek. 



To make my life story a bit more complex, back in the spring of 2025 I had genetic testing done to see if there might be a genetic component to my pancreatic cancer and not solely a result of CF. Well, my genetic test resulted in us learning that I have the BRCA2 gene mutation. So what does this mean? Well it means that a BRCA2 genetic diagnosis is linked to a 55-69% increased risk of breast cancer, a 13-29% increased risk of ovarian cancer, and a 5-10% risk of pancreatic cancer. These risks are realized at a younger age. This summer I was referred to a Gynecological Oncologist and Breast Health Specialist where we discussed the serious need to be proactive with these findings and my recent history of pancreatic cancer. Both specialists recommended that I have a full hysterectomy along with a double mastectomy soon. Given the last year of my life and the immense healthcare struggles I endured, I told them I needed a break from this intensity of care. I asked them if I could wait until I was 40 to have these conversations. While I am grateful beyond words for the care that I received over this last year - knowing I truly would not be here without it, I simply need a break.  To breathe. To live and love a little. To root myself in a gratitude that will give me the courage for what lies ahead. No matter what. Moving closer to my care center will make it easier for me to have these operations done when the time is right while in the care of all my care teams -specifically allowing my CF team to be an important part of the conversation. But, for now let's leave those thoughts and conversations to another day.


The biggest deciding factor for us to move? A stack of medical bills that are not covered by my insurance. They Include most all of my CF care: lab draws, CT scans, x-rays, breathing tests, not to mention other expenses like the anaesthesiologist for my Whipple surgery and so on. We simply can't afford to continue to pay out of pocket for the care that I need. It's also not fair for me to ask Mark to continue to sacrifice so much just to keep me alive. To live just to struggle. 


After mulling over the reality of the situation for a couple of weeks, in August I finally gained enough courage to tell Mark about all the medical bills. How did Mark respond when I finally told him about all the bills and what our insurance wouldn't cover? 


Mark: "We are done...we can't stay here [SD] anymore. We have got to go to Minnesota."


My heart sank and a knot formed in my throat because I knew he was serious. And I knew what it all meant. We needed to move to MN to get in-state insurance that would cover my clinic, hospital, care, and doctors. 


And it was just like that we exhaled and our lives seemingly changed. A pit of grief sits within my chest and I've done the best I can to hold back the wall of tears just waiting for my weakness to give way. I dare not let myself start to shed tears as I fear I will not be able to stop. I think about our friends, our family, our community. We love you more than words can begin to say. And the depth of my gratitude is not forged in a place but the people I will forever call "home". 


I hold my breath for a moment to delay the inevitable change it births forth into our body and back into the world - silently slipping between our ribs and through our lips. Sure, I'm scared of moving away from everything I know and love. Grief sits within my chest as an anchor to my worry. Is this the right decision? The right move? We are uprooting our entire life seemingly just for me? Mark is giving up so much just for me? And what if I go next month and they find the cancer is back? My CF is worse? Will this huge life change have all been worth it? Am I worth it? And it is not lost on me how this change is one reflected in immense privilege. And, this change, is indeed one of privilege. That doesn't seem to dull the ache in my heart any less. 


I am sure St. Peter will begin to feel like home when we get a bit settled and make the house our own. After all, we will all be together and that's what matters, right? There are many beautiful silver linings amidst all of this change and many beautiful adventures waiting for us in a new city and state. 


The most beautiful and meaningful silver lining? We are moving to the same town as some of our best friends and their amazing kids. This is an immense gift and we are so grateful to be so close to them. That has truly always been a dream and now it's going to be real. They fill my heart and life with such love. Just like our community, family, and friends we've collected in Sioux Falls. 


The love I hold within my life makes the pang of grief in my chest dissipate a bit. I take a breath and embrace the change that comes along with it. I can only imagine every time I take a breath that this life will only continue to change for the better. That this pang of grief will turn to nothing but the purest gratitude. 



Love to you all..





13 comments:

  1. Oh Ashley...you are worth the world - and more - to all of us blessed to know you. This next step is part of a larger community walk, and we're all with you! We all can find hope together, especially in moments of vulnerability and pain and real life stuff. Your words and example give me strength so that I can be gracious, and be optimistic, and be courageous in the face of my own fear. Thank you for sharing this. All love.

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  2. We’ll miss you in Sioux Falls, but I’ve lived in Mankato and LOVE the area—-I know you guys find its beauty! Best wishes on your adventure. Always thinking of you two ♥️

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    1. Steph Headley

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    2. Hi Ashley and Mark, I am not surprised about your courage from both of you for this big change. You are the most inspirational and kind people that I ever know. I hope and wish everything to go well with your new transition and your team of doctors to make it as comfortable as it can be when you are in need Ashley. My thoughts are with you and I love you both always 🌺❤️

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  3. You have always been a mentor and guide for me as I live with a complex chronic disease that is much less demanding than yours. I hope you will continue to write of your journey. You know Tim and i surround you with love as you go.

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  4. Tears fall and my heart squeezes as I write this. Yours are the words Curt knew would come out of your heart and soul. Again I say, there has never been a love story like yours and Mark's. Hand in hand with God. Feel our love and prayers as you step into this journey of life.🩷💚

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  5. I knew you for two days but I think of you every night as I take my Sparkle Fiber, Belly Blost and Gut Health that you recommended for my troubled gut years ago. Breathing Bravely, you have touched so many lives. May your new adventure be filled with the love and care you bring to all you encounter x

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  6. Ashley you mean the world to Mark and your parents and are worth every single penny to keep you with them! Change is always hard but remember the ones who love you so much!❤️. We will pray for you both in this next adventure! Love you, Lori and Kevin Tesch

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  7. You are worth it, for sure! Sorry that your health is forcing change but you will love Minnesota. Perhaps we can see each other again! You can get back to Sioux Falls easily when you wish, and your friends will welcome you back.

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  8. You both are worth doing whatever can make your life easier💗

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  9. You and your family are both worth it. Being closer to the care you need is where you need to be. You will continue to be in our thoughts and prayers 💕

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  10. Is there a go fund me for your medical bills? Can you post the link on your blog and FB?

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  11. Ashley, we have never met, but I have followed your journey through Mark. Your courage is God given and I pray that His plan for you is to continue to be a blessing in this world. I am inspired by you and Mark. Your writing deeply touches my heart. It was emotional for you to write it and I could just feel and see the tears. May God bless you both as you transition to St. Peter.
    Naomi Oltmanns

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