Monday, October 14, 2019


Dear Jacob,

We celebrated the mitochondrial community this weekend. We had a full house at the Field House.

It was a travel back in time to the 80s with leg warmers, neon colors, and oversized sweaters. Decorations were rad, music was fun, and our friends went all the way out for our community. We could not have asked for more.

We also happen to have the best Mitochondrial physician we could ask for. The best one. He speaks to the hearts of a whole room. He makes mitochondrial disease manageable. He cares about his patients. He partners with us. He knows what he can do for his patients, and where Miracles for Mito can step in. A mom squeezed my arm and said: " I want him to be my son's doctor". I could only agree, even if I can not wish this disease on anyone.

Our event brought me back to the 80s. Little did I think about having a family or having a child with mitochondrial disease one day as I lived through my teenage years. Mitochondrial disease changed who I am today. You taught me things about life who can only be lived. You learned me how to be a fire fighter and how to deal with uncertainty and fear. You taught me the incredible lesson on how to go on living despite the incredible loss of you. How to go on living and even find beauty in this world when the most beautiful thing has been ripped out of your heart. They are survival skills. It doesn't mean I won't fall again. It doesn't mean I won't hurt again, but I know how to land on my feet.

I could have walked away from mitochondrial disease and this community three years ago. I could have, but it was never an option. Having lived in the community for ten years and created Miracles for Mito meant that there was no way back. There was only one way forward. I am not going to lie. It is not always easy. I wanted you to be at our first Holiday party. I wanted you to sit next to Santa. I wanted to celebrate another Christmas with you. The thing is that no matter how deep I grieve, it can not take away the smile through tears from another Mito mom. On Saturday, one of our Mito children turned 16. Her family chose to celebrate her sweet sixteen birthday at our silent auction. Not everyone has a full room of people singing happy birthday. Not everyone get to dance to Footlose with your mom's arms wrapped around you. That makes me happy. It makes me happy because you taught me the incredible gift of enjoying each moment and understanding when those moments happen in life. 

It's a horrible disease that hit you, our family, and the families we support. In the middle of the cruelty of this disease, we have created something beautiful. Something that is here to stay, something that is incredibly meaningful, something that will never forget you, Jacob. This is the work of Miracles for Mito. This weekend, I felt the fruits of our hard work. We are making a difference, and I am keeping my promise to you. We will keep fighting the good fight. We will continue to do more.

Jacob, I love you to the moon and back.

Love, mom.

Sunday, June 30, 2019


Dear Jacob,

Tonight, I am sitting on the balcony of our hotel room with leftover wine and snacks my tribe left behind. The heat and humidity are finally fading away in the air. My feet are up after walking more than 20,000 steps in DC today. Sarah is soaking in the bath tub after walking and biking through the Capital, and seeing all the famous memorials. We're tired and happy. Over the last couple of days, families and physicians came together to share the latest research and treatments for mitochondrial disease. For a disease without cure, it's amazing the hope that you can find in a basement full of  people from around the globe. It's in the air, it's in the smiles and tight hugs, and friendships made over a glass of wine in the bar. It's on our t-shirts "I heart my mitochondria". This is the place where we all share loved ones, and losing a loved one is unfortunately not so rare.

Over dinner tonight, Sarah and I talked about the last couple of days we have spent together in Washington DC. I am literally so proud of your sister. She was dragged to Miracles for Mito's events before even starting kindergarten. She has spent all holidays and school breaks possible at Children's, and knows her way around a hospital room as a seasoned nurse.This week, she volunteered at the national mitochondrial disease conference. What we both enjoyed the most was lobbying at the Capitol. We got to advocate for a new Act funding supplements and nutrition for our Mito community and NIH rare disease research funding. We learned step by step that the Capitol is a maze, and that you can get lost more than once. By the end of the day, we mastered the underground tunnels between the different buildings as we walked between the Senate and the House of Representatives. We walked the talk.

I have proudly worn our "I heart my mitochondria" shirt. Your sister told me that someone came up to her during the conference, and told her she is part of the best non-profit in the country supporting families. I am proud of her, and I could see Sarah is proud of being part of what Heather and I and so many others have created. I wanted you to know this, Jacob. Your sister, who was your absolute favorite person in the whole wide world.

It's not just a logo on a t-shirt. I love the Power house keeping me going. I love that I know more about mitochondria than most people. I have learned to love healthy mitochondria. I have also learned the hard way what it means when your mitochondria are not working. It can be devastating, and take the life of humans we love the most, often at a too early age. It can also mean that after exercising for ten minutes, you have to spend the following three days in bed. It can mean that every doctor doubts your symptoms, and believe that it's all in your head until you meet that genius specialist who starts thinking mitochondria.

Last night, your very own Dr. Cohen got a prestigious award for lifetime achievement to mitochondrial disease. I will never forget that I last minute decided to drive to Wheatridge Recreational Center after you had had a procedure at Children's all day long. I knew the physician was going to talk about mitochondrial disease diagnosis. Right there in the rec center, I knew you had mitochondrial disease. It took five more years to prove what I knew that evening. You were demonstrating all possible symptoms but autism. I talked to Dr. Cohen after the presentation together with his metabolic doctor who was also attending. We talked about you, and we all three agreed that you needed to be started on a mitochondrial cocktail. I remember leaving the gym with a bunch of prescriptions, and a million questions in my head. I also remember leaving with a confirmation of your path and of where we were heading.

I will leave you tonight with a big full heart. The world you introduced me to will forever be mine. It's my people. It's the one place where I am not afraid of the reaction when I utter the words that you are no longer in this world. We hug a little tighter, we squeeze each other hands a little harder. We all know everyone is fighting a battle, and a little compassion and kindness will go a long way. We believe everyone deserves a little happiness. Everyone is fighting some sort of battle in this world.

It has been three long years without you. I wanted to let you know that your sister is ok, and I am so very proud of her.

Sweet Jacob I love you to the moon and back,


Friday, March 15, 2019


Dear Jacob,

I can't believe how long it has been since I last wrote. I have been thinking I should write, but I can't seem to stop long enough for inspiration to strike. This was the place I came when I needed to make sense to things in life. When I had too much on m plate, and I needed a space to breathe. I wrote about you, and I wrote to you for so very long. Tonight I am thinking back on your 13th birthday running on the beach in Lisbon, Portugal.

Waves breaking in the darkness make you focus on the sound of each wave hitting the sand. It's a sound that is both soothing and powerful. I ran in the rain on your birthday. It was a silent rain, not a down pour, just enough to get wet. Just enough to remember how much you loved the rain. We tried to protect you from rain, since it made you cold and wet. In reality, we should have enjoyed the rain more. I will never forget when we ended up in the pool in a down pour. We had the whole pool to ourselves and you just loved it. I will never forget your happiness when your speech therapist and friend took you outside to feel the rain on your hair, cheeks, and hands. You were in heaven. You sure knew how to enjoy the little things in life.

I sat on the beach before the sunrise, and wrote your name in the beach sand. No words or action could take away the heartache. Just a long day remembering you, and knowing how incredibly hard it is to only be surrounded by memories and not your actual heartbeat and beautiful face. How no wave in the world can wipe away the pain in your heart. How no wave can wipe away the sorrow of a mom's broken heart.

It was a mistake to be away from my people on your birthday. I thought by birthday number three that I maybe would be ok to live in the world. It was not as easy as I thought. I missed you terribly, and I had no one I could really talk to in between business meetings. That made me feel more alone than I have in a very long time. It was a blessing when I finally could call home late at night. I could hear the sound of the grocery bags as your pie was unpacked. The pie to celebrate you. I should have been there. The knowing that the two people I love the most in this world celebrated you together. I was just in a bed very far from home.I know I will not repeat that again.

In the loneliness of grief, I have my tribe. The ones who love you like I do. Voice messages from our friends who love you. Texts and emails of love from friends and family. I cherish each of you who reached out to me on Jacob's 13th birthday. Thank you.

As the beautiful weekend rolled around, I ran along the beach. The sun was up. Families, couples, friends, and dogs were surrounding me. Smiles and sunshine met me on this lazy Saturday morning. My legs are not used to run any longer, but they took me six miles along the beach. It was a slow but heartfelt run. After a shower, I went back to the beach with One Republic pounding from my Beads. I sat on the beach, listened to my music, heard and saw the beauty of the waves and just sat in my grief. I sat and let the tears roll down my eyes. It was exactly what I needed. Beach, Waves, and One Republic.

I will end with a favorite poem of mine:

As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.

Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.

Jacob, you sure left me lots of shipwrecks.I love you to the moon and back,


Wednesday, December 26, 2018


Dear Jacob,

You know what is the absolute best for my soul? It is spending quality time with friends who love you as much as we do. Friends who truly saw you for who you were as a person. Friends who always treated you as a child. Friends who cherished you every step of the way. Friends who were heartbroken when you caught yet another infection and wrote long get well letters. Friends who baked bread and put on the front porch while we were in the hospital. Friends who brought Chipotle to the hospital and played with you right in the hospital bed. Friends who crafted with you, played dress up, and went swimming and biking with you. They made your life rich. They made your life normal.

We just had a long week of Christmas celebration together with your friends, and it was simply wonderful. It's our kind of people. We drink coffee and wine together. We talk, we walk, we talk, we bake, we drink some more coffee, we laugh, we eat. We talk a little more. We talk about the important things in life and the trivial things. Conversations, food, and togetherness all woven in to beautiful friendship. There is no special "remember Jacob" talk. It is just part of what we all do and say.

I will never forget the first play date you had with Selina and Leandra. You went to preschool with Selina. You were best friends with her and Alyssa. You did anything to be with those two girls. One day, her mom (now my dear friend Nadia) asked if you wanted a playdate at our house. It was the first true play date you had ever had. I was nervous. I was thinking they would play with you for maybe half an hour, and then what? I just didn't know how we would do playdates. How I misjudged you and the girls. It was a playdate of six hours and it was the most beautiful friendship revealing in front of my eyes. I was exhausted from carrying you around the house, but my heart was full from seeing you being so happy. You both taught me so many lessons about friendship.

When you passed and Selina found out you died, she went up to her room and wrote the most sincere letter to you. I will cherish that letter forever. The pastor read it at your memorial service. I know how important friends are to the happiness in my life. Selina and Leandra gave you that quality in life.

On Sunday, Selina and I visited with you in your room. I showed her all the things she had made with and for you. I was amazed by her memory of where and when she had crafted with you. She smiled as she saw pictures of you and her together - in the pool, at the pumpkin patch, at school, at our house and the list goes on and on.

On Christmas Day, we all went up to Flagstaff to visit with you. This is where your ashes are spread. It was cold as the sun was about to set over Boulder. The sky was dramatic as a painting. We took in the beauty of nature and you, Jacob.

Tonight my heart is full. Our Swiss friends are what my heart needs. Thank you, sweet Jacob, for having them all come in to our lives and stay in our lives. They all sweeten this Christmas.

Jacob, I love you always to the moon and back,


Sunday, November 25, 2018

We're in it together forever

Dear Jacob,

"How are you?", I said after giving her a hug and holding her hand a little longer than normal.
" I am starting to feel the holiday blues. You know, it's that time of the year", said my dear friend who lost her daughter too early. It was a cold Monday night in Denver downtown. The city already lit up for the holidays.

I loved her honesty. I loved her not falling in to the "I am fine" trap. I loved her recognizing right where she was with a teary glance in her eyes.

Over the last couple of weeks leading up to yet another Thanksgiving without you, I have stated over and over again in my mind that we're on this journey together forever. I have to get through the holidays without you every year with you being in my memory, but not physically at our table. Each year being slightly different. Each year bringing the obvious screaming fact that you will not be celebrating the holiday with us in your beautiful physical presence. Grief counselors and grief specialists have already stated it. Grief is not linear. Grief is not something that just disappear after a certain amount of time. Time can heal, but we're in it together. Forever.

I have seen your flattering eye lashes and your beautiful eyes in front of me. It comes as a flash back when I least expect it. I see the rest of your face, I hear your sighs, but the focus is on your eyes. It was hard for you to have your eyes fully open due to the energy needed, and now I appreciate more than ever those half open eyes with thick black eye lashes. Sarah and I were always envying those long eye lashes that sometimes got stuck in your eyes. You inherited them from aunt Jenny.

Jacob, I can say that I survived yet another holiday. In fact, we had a very lovely Thanksgiving with our best friends. I will love my friend forever to remind us all of your last Thanksgiving with us, and how you told us "I love you". No Thanksgiving will ever pass by without me thinking how you shared your blessing with us all the Thanksgiving of 2015. We continue to make "your" ornaments you put in to factory during the month of December to make sure all your teachers, therapists, and nurses got a special hand made gift from you. I love that you sister wrote "Love Jacob" on the ornament I silently created this year. We always have a lot of fun crafting together.

The holiday had me slow down, which was great. I slept, I exercised, I had time with your dad and sister, I caught up with friends, I baked, I cooked, I nurtured a cold.

And I decorated our home for Christmas. I love to transform our home for the holidays. I go all the way out. Every room has Christmas decorations, and so many ornaments come with a story. It's a gift I cherish each year as I am unpacking boxes of holiday memories.

I enjoyed the most to put up our Christmas tree in the basement, one of many trees in the house. This tree is full of memories. It took me down memory lane. It reminded me of all our years together. Sarah and I laughed as we remembered times in the past. Sometimes, we had to think twice if the ornament came from her or you. I cherished each moment. I cherished the past visiting the present. I cherished the fact that we have so much happiness wrapped up in a plastic tree.

You made this ornament in kindergarten with your teacher.

The ornament you made at Gemma's before you got to see Santa and tell him you wanted a "Minion fart blaster" from Santa.

Gosh! I created this ornament in 2009 during a 2 months hospital stay when we didn't know if you were going to make it home at all. You proved the doctors wrong, and we got to hang this in our tree.

My favorite ornament you made at Coyote Ridge. I am not sure what it is, but I love it.

You and I in 2009! It was a really rough year for you when we started to see the true face of mitochondrial disease. Another ornament I made in the hospital that year.

I spy a Minion! I am not sure what year you received this ornament.

You created this ornament your last Christmas. You had a terrible day of seizures, but decided to craft with Gemma's boys no matter what. You put so much effort into this one snow man.

I think you got this angel your first year of Christmas. We knew you needed an angel to watch over you!

I am grateful for all the memories we made. I am grateful for the life we lived together. I am grateful for all the life lessons you taught me. I am grateful to be your mom.
And as hard as it is some days, we're in together - forever.
Sweet Jacob, I love you to the moon and back,

Saturday, October 27, 2018


Sweet Jacob,

I went back to the PICU where you passed. I typically don’t shy away from the hard parts of life. I usually don’t shy away from a difficult conversation. I stay true to my values in life, something I learned from my grandma and parents very early in life.

I did stay away from the PICU. I stayed away from the one place where I lost you. I stayed away from the place where my heart has been beating through my chest. My heart beating of fear and worry for your life right in the middle of the ICU. The true kind of heart beating that make you lose track of time and where you feel the adrenaline kicking in, and your brain stays hyper focused.

The true reason I stayed away from the PICU was not the memories of you being sick. The reason I stayed away is because I didn’t want to relive you dying. It was as simple and as hard as that. I visit the hospital most months of the year. I have been in hospital and conference rooms, but did not enter the doors of the PICU. I knew I would one day, I just needed a good enough reason to do it.

When I got the e-mail that I was assigned to the PICU for my Board rounds, I knew this was the right time to face my fears. I was going to enter the PICU as a Board member and a Parent Partner of the hospital, but truly I knew I was going in as your mom, Jacob.

As our host and head of the PICU opened the door to the ICU with his badge, the click of the heavy door brought back a flood of memories. A click of a heavy hospital door. It reminded me of the sound of a prison cell closing behind you. I had never associated the sound that way before. The smell and colors of the walls embraced me. It was like going back in time where every little detail is ingrained in my brain. The floor I ran on the last time I made it to your room. The nursing stations, the bath room, the shower, and the many machines supporting the life of children fighting for their lives this very second.

My legs took me to the conference room, my brain still formulated the right sentences, my hand still hold on to my bag. I felt a light taste of metal in my mouth.

We all had to introduce ourselves in the conference room. I got hugs, not one but many. Many hugs because this is the tribe that saved Jacob’s life not one time, but many times. This is the team that fought our good fight side by side with us for ten beautiful years. The head of the PICU didn’t just introduce himself with his title. He also introduced himself as your doctor and acknowledged knowing our whole family. It was an intense feeling to be surrounded by the team who fought so intensely for you for so very long. The team who loved you, but was sad to see you return and cherished every time you moved up to the regular hospital floor. The team who said their goodbyes to you on June 19th, 2016 together with us.

When you needed the hospital, we actually preferred to be in the PICU. We knew there was no better place caring for you. The access to your medical team and attention to your acuity level were incredible. We always felt safe when you were in the PICU. Always. During the presentation I actually found out that our own Children’s Hospital is one of the most safe PICUs in the country. It was incredible to see the data on the screen validate our experience for ten years with you.

The one image I keep coming back to is you and I sleeping together in your hospital bed. It was often followed by many intense hours in the Emergency Room and a long intake as we finally arrived in the PICU. When everything was settled after hours and hours of tests and telling your story, the calm arrived in the room. It was only you, the nurse and I. You were typically sleeping from pure exhaustion and being on strong medications. That is the time when tears of exhaustion often came after holding it together. I got on the cover of your bed, I found a place next to you, and found your little hand. I still remember the feeling of your little hand, the shape of your nails, and your rhythmic movement you couldn't control. I have had some of the best naps next to you in the PICU. I miss the intense connection of doing whatever it takes. You and I on the hospital bed is an image that makes me miss your terribly. I even miss the green blanket we were laying on.

After the presentation, it was time for a tour of the unit. I ran into several of your nurses. They were surprised and happy to see me. We hugged, we smiled, we remembered. I felt at home in the middle of beeping monitors, scrubs, and clinical cleanliness. I even peaked in to the very room you were in the last time. The bed was occupied by a little girl. I felt at home in the shared smiles and teary eyes and so very connected to you and your past. The very meaningful life I had to walk away from to start a new life without you and the hospital we called our second home. It hit me hard to think about what it means to start over, especially when the decision wasn’t mine.

I also got to see all the improvements they have done for our families. I loved to see the Family Board right outside the shower room, and to hear that the actual shower room will be remodeled. I love that families can access the patio without leaving the unit. I sat on one of the patio chairs so many times eating my lunch or dinner and feeling the sun on my face. I love how the PICU continues to partner with us parents, knowing that we parents know our children best. I witnessed it this morning over and over again.

A good day in the PICU!

When I left the hospital this Tuesday morning to drive in to work, I felt exhausted but accomplished. I did it. It was so much better than I thought. The sincerity and true love for you made me realize that a part of you will always be on the 3rd floor of the hospital. I will go and visit again when the time is right. I know you will give me a sign.

Sweet Jacob, I love you to the moon and back.

Love, your mom.

Saturday, September 1, 2018


Dear Jacob,
It has been more than two months since I wrote you last. This must have been one of the longest stretches without writing. I thought I would write during vacation, but I decided to just live in the moment and enjoy family and all the fun things we did.

First time at Louvre for all of us. 

I think of you all the time, Jacob. And I now know what you taught me more than anything, being fearless. I am not afraid. We all shy away from difficult conversations or being afraid to take that next step. When you have had the worst thing happen to you, you can just not be afraid anymore. It's exhausting to be fearless at times, but it's also comes with a sense of freedom. A sense of clarity and staying true to yourself at the same time as you know you have had to pay a very high price for this wisdom of life.

Me out at sea somewhere between Finland and Sweden

Jacob, I always thought I would be part of a big family. I loved being surrounded by generations of relatives on both my parents' sides for holidays, birthdays, and family reunions. The more the merrier. My grandparents' apartment always had room for another kid or relative. I receive energy from other people. That is how I keep going.

Family in Kivik

And now we're three musketeers. We had to become this close to survive without you. We're all drawn to each other to make sense of the big hole you left behind. I am not sure who started the group text, but we're always sending each other little things. Nothing special, nothing major, but always staying connected. I love that little life line. Knowing we're in it together.

I know I am a lucky mama that my girl wants to spend time with me. Believe me, I can drive her nuts. We fight. We argue. But we're close. We're really close. We love hanging out together. We love spending time together. We both know when we have the best of times together, and you're never far from our minds.

Coffee break in Paris

This summer, we did have the best of times. Work takes me all over the world. This summer, I got to take your dad and sister with me. We spent almost two weeks in Sweden. It was true vacation. I felt so spoiled by genuine family love. I didn't realize until deep into the Swedish summer nights how important it was to talk to family and friends about you. Last time I visited your dad's hometown was when I was pregnant with you, thirteen whole years ago. Many of our relatives we have not seen since you passed away. Many relatives have never met you. Family needed to see we are fine. I have so many memories I will bring into the fall and winter months from this summer.

Joakim's family on Hanö

Joakim's family in Höganäs

Coffee break with aunt Jenny and Rickard

I loved to watch Sarah interact with her family on both of our sides. I loved to watch her being a world traveler. I loved her falling in love with Sweden and Paris. Berlin wasn't too shabby either. I loved to show her the world, and make memories we will keep with us forever. I love to watch Sarah interact with different cultures, food, and more than anything friends and family. We had so much fun.

Stockholm archipelago

At sea with grandpa

Having fun on the island Sandhamn

Sarah and her auntie Jenny

Dinner in Berlin

Berlin wall

On the island Sandhamn

Jacob, the price is high. We could never have done this with you. We would go back to be the family of four we were intended to be in a heart beat, but we can't. We don't have that luxury. But we can live. We can do the things we want to do. And I do want to show your sis the world.

A heart in the Stockholm sky. I thought of you, my boy.

And from the dream of a big family, I cherish and silently appreciate being part of my musketeers.

Stockholm archipelago

Sweet loving Jacob,

I love you to the moon and back,