Sunday, November 7, 2021

Come along on Letters to Jacob's book tour!

Letters to Jacob is going to be featured on different book sites throughout the month of November:

Tour Schedule:

Nov 8 – Working Mommy Journal 
Nov 8 - Rockin' Book Reviews 
Nov 9 – Splashes of Joy 
Nov 10 – Locks, Hooks and Books 
Nov 12 – Lamon Reviews 
Nov 15 –Gold Dust Editing & Book Reviews 
Nov 16 – A Mama's Corner of the World
Nov 17 - Kam's Place 
Nov 18 - Cover Lover Book Review 
Nov 19 – Lisa's Reading 
Nov 23 – @twilight_reader 
Nov 24 – Literary Flits 
Nov 26 – Books for Books 
Nov 29 - Jazzy Book Reviews 

Come along for the fun! There will be book spotlights, guest posts, and giveaways!

Thanks for coming along on Jacob's journey, and sharing in my raw, personal story of love and loss.



Sunday, October 25, 2020


Dear Jacob,

I was standing in front of my closet, and picked out my simple black funeral dress. This dress wasn't bought for funerals, but this is what it has become. A black simple dress covering my knees. It has gotten a bit worn over the years, but it's the dress that has come to endless funerals of children who had to say goodbye to loved ones too early. 

As I sat in the car, the tears came flowing down my cheeks. I saw your smiling face in front of me, and thought about the day I had to be stronger than life itself. I had to be at your funeral. I explained to hundreds of friends and family that it was never hard to be your mom. The hard part was to let you go, to rebuild a life remembering and honoring you each day. To grieve you with grace for the rest of my life.

As I was driving, I was thinking of the beautiful girl we were going to remember forever. Her end of life story was similar to yours. She suddenly got sick, and came home on hospice. Her body was tired, and she slept a lot. Her body needed the hospital one more time, and that is where she peacefully passed away two days later. As I got the mom's text that she was sleeping a lot or that she had to go back in to the hospital, I bit my tongue and wrote some encouraging words rather than saying it sounded like our story. I wanted to keep hope for the mom, and knowing the girl was in charge. 

I didn't know how a funeral would be conducted in times of Covid-19. It was a smaller service, everyone social distanced, wore a mask and no reception afterwards. Goodbyes were said outside. It was a beautiful service. The church was filled with pink roses and flowers and a large Christmas tree decorated with pink ribbons and white glass ornaments was the centerpiece. Little bells with pink ribbons were handed out to us. We sang her favorite songs including Jingle Bells. This girl had planned her own funeral down to the smallest detail. It was beautiful, it was her day. As tears were silently falling, stories of a strong girl who lived her life to its fullest, who always wore pink, and who always got the last word in every conversation. A girl who asked her loved ones to not forget her. 

As I drove home, my mind went to the parents. Both faced with the unthinkable task to rebuild their lives without their girl. I literally felt that I had to start walking again when I lost you, Jacob. Life was a blank page where I had to start writing my story once again. It was not a page I wanted to fill, I simply wanted my old familiar life back. 

As I was reflecting on how you go on living, and how as a grieving parent you don't totally fit into this world any longer. We struggle with small talk, since we crave sincere, honest conversations. We have no problem to discuss death and grief over coffee and wine and in fact do better when we can have those deep conversations. We don't always know what to say to a parent being upset about their child having a cold or struggling with homework. What I would do for another sleepless night next to you as you were struggling with a nasty infection or sitting in another IEP meeting. I would do anything to once again tell the teachers that I didn't care about any of your goals, I just simply wanted happiness for you. 

Four years into the grieving journey with no end date, and I realize that grief and loss leave their traces. I am still a natural fire fighter. I love the adrenaline from fighting a good fight. Sometimes I go into fire fighting mode when the situation doesn't require it. Please dear world, know that this is engrained in my body after having fought life and death for ten years. I care deeply about what is right or wrong, and sometimes struggle when people don't care as much as I do. I might unintentionally judge when people compromise their beliefs because maybe in the moment it's the easiest to do so. How incredibly lucky I am to have family and friends who get it, and who get me.

And as the service came to an end, I was standing in the parking lot of the church holding another grieving mom's hands. We talked about the day we buried our children as we were shivering in the cold fall air. Many times a sentence didn't have to be completed, we both knew. As our newly grieving mom reached us, no words were needed. The moment only needed tight holding hands full of grief and grace.


Thanks for everything you taught me. I love you to the moon and back.

With love,


Sunday, March 22, 2020


I love this quote, and I feel it's very fitting in our world today.

Jacob was so very sick. I had just came home from body pump and found Jacob seizing and slightly blue to his skin due to him not being able to hold his oxygen despite Joakim cranking up the oxygen concentrator to 10 liters. In minutes, we were in an ambulance. Sepsis was confirmed in the ER, which led to a whole protocol of tests and rescue medications to save our son's life. Later that afternoon, we found out Jacob had intestinal translocation. Dr. E. decided to deliver the news herself together with Jacob's GI doctor. We knew that meant it was serious. She asked me to have Joakim come to the hospital. She wanted us both by Jacob's side. Due to Jacob suffering from adrenaline insufficiency, he couldn't fight this without high doses of IV steroids. It was one of many times in the ICU when I didn't know the future of Jacob's life. I was sick to my stomach of worrying, and not knowing what the next hour would bring.

It was spring break. Sarah's cousins had saved up their money to come and visit us all the way from Sweden to go skiing with us in Breckenridge. We had organized for nursing around the clock to spend two days together up in the mountains with Sarah and her cousins. The rest of the week, Joakim and I would tag team between Denver and Breckenridge.

All of that was thrown out the window when Jacob came down with intestinal translocation. I still went running around Children's that Saturday morning. I stretched at my regular spot and looked at the sky as I was feeling my tired calves, and knowing that all our plans were out the window including the future of Jacob's life. I remember looking into the clear blue Colorado sky thinking "this will also pass". There will be another vacation with the cousins, there will be another spring break for Sarah, there will be another time. The only thing that truly mattered in that moment was that Jacob would be ok again.

As we're all social distancing and self quarantining, I feel a sense of familiarity. I have put my whole life on hold so many times. I worried about Jacob's life for ten years. I learned to live in uncertainty, and being the best fire fighter you can imagine. I learned how to find laugh and humor in the hardest of situations. I always had someone giving me a big hug, a warm smile or simply holding my son's hand. I went to bed so many times not knowing what the next day would bring, but I always greeted the sun rise no matter what the circumstances were.

As we're now facing COVID-19, we all have emotions and worries. We are all impacted in one way or another. We have all seen pictures and videos from China or Italy or even know someone who can tell her or his own story in great detail. What we fear is to die or have someone we love die. I know this fear. I lived with it for ten years. Sometimes my head would spin from worrying. I knew it wouldn't change anything, but logic and common sense didn't always reach my mind. I always came back to this quote "Worrying doesn't empty tomorrow of its troubles, it empties today of its strength." 

This journey is personal to each of us, but don't lose your strength. If we look closely, we have so much. Know what you need to keep sane. I run again as I always did to clear my head, I walk the dog to breathe fresh air and find my boy in the sky, and I am silly with my girl and husband to get them to laugh. I check in with friends and family, and sending all my positive energy and thoughts to our most vulnerable and healthcare workers to keep fighting the good fight.

In the middle of COVID-19, I have hope for humanity. Good health is never guaranteed. COVID-19 doesn't care who you are or what you have done. We can only work together, and we will need everyone's strength and humanity. I have hopes the world will change.


Friday, December 20, 2019


Sweet Jacob,

Today was a good day. It was a sweet reminder of what truly matters as well as spreading some holiday joy. Sarah and I volunteered at Snow Pile at Children's Hospital. All patients received an overflow of Christmas gifts today. Parents got their own personal shopper, who helped to pick out presents for all their children. An enormous conference room is converted to a glorious toy store filled with gifts for all ages.

Do you remember when we participated in Snow Pile? I believe it was in 2008. This was the first Christmas you were hospitalized. You had a bad case of pneumonia. We were so hopeful you would come home in time for the holidays, but it was not in your cards that year. I remember a volunteer entering our room to take me to Snow Pile. I remember being surprised to be assigned a personal shopper and entering the large conference room filled with toys. I was behind on my Christmas shopping, so the timing was perfect. I knew Sarah would especially enjoy the extra gifts under the Christmas tree. It spread some light in a stressful day of fever, tired lungs and antibiotics.

Today, Sarah and I were the volunteers entering patients' rooms. We were responsible for the PICU. We know that unit in and out, and the familiar click of the heavy door as I was entering the floor. I know the cleanliness of the floor and the endless rows of monitors in each room. I know the feeling of sleep deprivation bundled with stress and anxiety. I know how hard it is to leave your child, even for a brief moment to go shopping. I know the only thing you want for Christmas is to have your child home again.

As I escorted the parents down to Snow Pile, I got a glimpse in to the lives of the moms and dads.  The hope of being home in time for Christmas despite it being less than a week away. Parents suddenly realizing that life is going on outside of the doors of the PICU. Their smiles as they realized they would get a little break and a little help this year. I was so happy I could relate to their stories. I touched a shoulder of a mom who had not slept all night and suggested her to take a nap this afternoon. I encouraged a dad to ask his physician to explain what the plan for his daugher is. I told a mom about the holiday meal served in the hospital on Christmas Day. It was tidbits from our lives, and little moments of understanding between two parents knowing what is going on inside the hospital walls.

I got a big hug from your physician during your last and final hospital stay. She was so happy to see both Sarah and I. She asked if I was ok. I thought about it before I answered, and I could tell her that I am ok. In fact, it felt great being back in our familiar place and give back. I also got to hug and chat with some of your favorite nurses throughout the day. I did have to take an extra big breathe as I passed the room where you died, but I was doing ok. I am in a place I still call home.

I am so incredibly proud of your sister. She has found her own place at Children's. She knows her people all over the hospital, and she is very good with parents and patients, even when she is surrounded by the sickest children of the hospital. I always knew you were going to give her the gift of compassion. I see it, Jacob.

It was a day of spreading joy and the holiday spirit in a place you introduced to us. It was even better sharing the day with dear friends.

Sweet Jacob, I think of you so much this time of the year. As I put on my favorite leggings this morning, I realized that the pants would be perfect to snuggle up with you in a hospital bed. The simplest of things are what I miss the most. How grateful I am tonight that I got to simply be part of the holiday spirit right in the heart of the hospital.


I love you to the moon and back,


This is why I love this place.

Thursday, November 28, 2019


It's Thanksgiving week, and snow is surrounding me. This afternoon as the sun was settling the sky was purplish pink against the white silver snow. I felt muscles in my body I didn't know I had from shoveling with my girl today. Our dog was so happy to see the snow he didn't know what to do with himself. We made our first Swedish glögg (gluehwein) of the year after finding a bottle hidden in the kitchen cabinet.

This morning I joined our weekly Mito support call hosted by Miracles for Mito. It's led by our seasoned nurse Marybeth Hollinger specialized in mitochondrial disease. Since my girl was in the kitchen playing rap music on her phone and our dog was running around, I put the call on mute as I was baking and cleaning and listening to this wise community of patients across the country.

The topic of today's call was Thanksgiving. Holidays are not always an easy task when you're managing a chronic disease like mitochondrial disease. Stories unfolded. The typical Thanksgiving meal is full of carbs and not always the easiest food to digest. This means for some of our adult patients they need to skip the meal completely. One woman expressed her thankfulness to simply smell the feast and holding the grandbabies as the family is enjoying their special meal. Some are going to stay in bed today resting their mitochondria for the anticipated stress a holiday has on a mitochondrial body. Every single one knowing family and friends is what truly matters, not what is served at your table or if you eat stuffing and pie.

I love Thanksgiving. It's my favorite American holiday. It's a holiday of friends, family and giving thanks. We celebrate with friends we call family. It's casual, the best meal of the year, long conversations and friendships. What I love the most about the holiday is that everyone independently of age can give thanks. Last year, I had a big lump in my chest. Jacob was sitting in my chest. Despite all gratitude, I didn't even dare to mention his name not knowing what emotions would evolve.  After hearing all stories unfold this morning on the Mito support call, I realized we all get to tell our story. Maybe not every part of your life is perfect, but we all have a magnitude to be grateful for.

Today, I will tell my story. No story is perfect, but it's my story. My holiday is shaded by the empty chair of Jacob, but I have a tight knit family right next to me. They get me, and I get them. I have friends who are standing by us no matter what. I get to enjoy the craziness of the day before Thanksgiving, bake pies and side dishes and hearing girls giggling in my kitchen. I get to savor all the flavors of Thanksgiving and laugh with friends. I get to live. I get to be thankful. I get to tell my story.

With gratitude,


Friday, November 22, 2019


Sweet Jacob,

It's happening. I am tackling my bucket list. I am turning your blog into a book. It is something I wanted to do in my life time, and I am doing it. I am focusing on the year after we lost you. The year when I realized that grief and love are the same thing. They are inseparable and will always be. Grief would not be hard, if it weren't for the fact that my body aches for you. My arms feek empty without you in them. My lips want to kiss your nose one more time. I miss our life together, and even more I miss my purpose to be your mom.

I am still searching for that larger purpose in life you gave me. I will write about it, and take your readers on a journey on how it is to get through life by missing a body part. That is how it feels to not wake up with you any longer. Life was simpler in many ways. As I am reading what I wrote, I sometimes catch myself with tears in my eyes. It brings back raw feelings.

I was nervous to get back the first round of edits from your editor. I felt as if I were back in school being graded. It is just a touch more personal this time. It is our story, our life together.

I believe it will take me into the spring to fully have this project completed, but it is happening.

Stay tuned.


I love you to the moon and back,