SECOND YEAR

Sweet Jacob,

A memory popped up on my Facebook page that I had completed my second Century bike ride two years ago. I smiled in to the camera. My legs felt like jelly and I smelled like sweat. I was having a melted chocolate bar in the shade before I jumped in to the car to drive home. Little did I know that you were going to stop breathing that evening after we had put you to bed. Little did I know that I was going to give you CPR that evening and bring you back to life. Little did I know that we were entering the last month of your life.

We're nearing your second anniversary. You would think it would get easier with time. You have gone through the year of "firsts". You have been there before. You know how it feels to be without you on all the major holidays and milestones of a year.

What I know is that is not easier. In many ways, year two is harder. The first year you are expecting it to be hard, to be unbearable. Year two, you are more alone in your grief. You mastered it already once, so you can do it again. In many ways, it's harder due to that. It's harder because there is no road map for grief. There is no straight line. Some days are perfectly ok. Some days are hurtful. You just never know.

The biggest difference now is the realization that life will continue without you. It has hit me. This is the new life. I don't think that ever settled in to my brain during my first year without you. It was more surviving from day to day. Now, I know that this is it. I need to learn how to live the rest of my life without you. This is my new life, and I am still learning. Each and every day.

What I know is that there are days where my feet just take me to your bench at night. The only thing I need is to sit on your red bench and watch the sky over the mountains. There are times where the only place I can be is in your room surrounded by memories. There are times where you to take over my whole heart, my whole brain, my whole body. I miss you so much, Jacob.

I am still learning how to define life. I continue to have major changes in my life. I master them one by one. I am wondering if I one day will sit back and say it all came together. I get to travel the world in a way I never could have done caring for you. I do know it's a privilege and I do get to meet the most sincere people. Thursday night, I was lost in Toulouse walking up and down the cobble streets, and somewhere you found me and brought me back to where I needed to go.

My personality wants everything to settle into places. As you always taught me, life is a journey made of moments to cherish. I am still learning that very lesson of life.

Tonight, I am right where I should be. I am on a balcony writing to you in hot Arizona. I am surrounded by my inner circle; your dad who is my biggest rock, and your beautiful sister who always keeps me honest and who I admire for the person she is. We have spent the evening with one of your nannies, whose whole family turned into friends for life. Friends who get. Friends who have had to fight for their own son's life. Friends who tonight celebrate their son being a cancer survivor. Life is coming full circle, and you're right in the middle of it.

Sweet Jacob,

I love you to the moon and back,

mom.

TO KNOW OR NOT TO KNOW

Sweet Jacob,

I have been thinking about you a lot. It still sometimes feel so unreal that you are gone forever. Forever. It's a big word when I know what an incredible big part of my life you were, and what a big part you continue to be of who I am. I find you when I slow down in my busy life. We meet in the car, we meet on your memory benches, we meet on walks, and often there are the most unexpected triggers. 

I wanted to let you know that I had a very inspiring conversation with one of you mitochondrial doctors recently. After they discovered your gene mutation CARS2, researchers around the world have discovered several mitochondrial diseases in your family of genes. Your gene family is prone to mitochondrial disease. I remember the day as if it was yesterday when your Belgian researcher wanted to do a full gene exome sequencing on you. It was still expensive, and insurance companies resisted to pay. Your doctor had received a grant to test five families he thought he could diagnose. He had picked you. He had picked our family. He told us that the chance of diagnosing you would not be an easy task. He just knew you had mitochondrial disease. He just didn't know if he could prove it. As we gave our blood samples, I remember thinking that this was maybe just another step of many keeping you in the category of "probable mitochondrial disease". 

Bingo! They found your gene mutation. I remember your mitochondrial doctor and neurologist being so happy. They had found a new gene causing mitochondrial disease. It didn't really change anything for us. We were already doing everything we could to treat your symptoms. It still gave us some sort of comfort. The puzzle was solved. Another piece of comfort was that we could test Sarah, and finding out she is not carrying a bad copy of CARS2. This disease will stop with you in our family, sweet Jacob.

I found out your Belgian doctor has taken an interest in your specific families of mitochondrial disease. He thinks he can actually find a treatment. A treatment for a disease without a cure is a big deal. It's something I just never thought I would live to hear for kids like you, Jacob. The funny thing is that the treatment is something you didn't tolerate well. In fact, it triggered seizures in you. I didn't get all details, but I am very much looking forward to having this conversation with your Mito doctor to find out more details. 

Having lost you, it's with mixed feelings I hear big words about treatments. If you only had kept on living for a little longer. At the same time, it gives a lot of meaning to your life. Your diagnosis led to more diagnoses, which in return led to more understanding of this family of mitochondrial diseases. Your brilliant researcher is seeing a pattern thinking he might be able to fix this - all starting with a blood sample that none of us thought for sure would lead to a new mitochondrial disease.

Science is moving faster and faster. You were seven years old when you got your firm diagnosis. Seven years of not knowing for sure. Today, babies are diagnosed within their first week of life. Parents googling mitochondrial disease as they have not yet left the hospital after their baby's birth. Parents looking at their perfect babies wondering what organ failure, muscle weakness, fatigue, and seizures have to do with their beautiful babies.

With genetic testing rapidly moving forward, there is research happening around if parents and patients want or not want to know their diagnoses. Sequencing all genes today is not a big deal. You are no longer a family needing to be picked. Do we want to know what might or might not happen to our perfect baby? Do we want to know what is going to happen to us in five, ten or thirty years? 

It's an important question discussed over cocktails. There is no right or wrong answer. I was thinking about our journey, knowing that I would never have wanted to know everything that would happen to you in your ten years of life your first week of life. Your first week of life I was sleep deprived, but full of joy, happiness and hope. I took you for walks in the neighborhood. I fed you around the clock. I dressed and bathed you, and had never heard the word mitochondrial disease. You perfected our family. I got to hang on to the illusion of a new healthy baby for two and a half precious months. I am so very thankful for that time.

As you started showing symptoms, I absolutely wanted to know. It hurts to be a mom not knowing. That is where today's technology can give answers  and knowledge to families faster. The question is if you want to know the big diagnosis as your child is not yet showing symptoms? None of us could answer these questions with a yes or no over wine and vodka. Both sides can be argued.

I think deep in my heart for a long time I was hoping you would prove all doctors wrong. You would prove them you were not sick. But as the symptoms kept piling on and hospital stays got repeated, a diagnosis got you the adequate care and considerations necessary to keep you alive.

I am amazed with how fast science is moving. How much we're learning, and that the word treatment is used in the same sentence as your disease. In the middle of my own grief, I feel so incredibly proud that you, Jacob, helped to move science forward. It hurts and warms my heart at the same time, Jacob.

As I think about these things, fascinated by the resilient researchers not giving up, it gives me a little comfort that your own life contributed to this path we're on, making life better for your mitochondrial buddies.

Jacob, I love you to the moon and back,

mom.

IT HAS BEEN TOO LONG...

Dear Jacob,
It has been too long...That was the first thought as I was sitting down to write. I am sitting on a shady balcony in a summer dress, surrounded by palm trees, and distanced laughter from the nearby swimming pool. I am on vacation in sunny Florida with your dad, sister, and one of Sarah's dear friends. We have had a wonderful spring break together.

It has been too long, Jacob. I needed a vacation to slow down after probably one of the most crazy intense couple of months of my life. Work and travel got the best of me. It has been a true whirlwind.

Florida brings back a lot of memories of you. This is the place we vacationed together out of State. We went to Disney World twice. This is where your Make-A-Wish trip went eight years ago. The place we're staying at is pretty similar to the place we stayed the first time we went together as a family.

Riding "It's a Small World" in Magic Kingdom the other night I smiled thinking of you never getting off the ride. You rode and rode around the world as the lyrics got stuck in our heads and the rain was pouring down outside. I knew where I changed your diaper as Joakim and Sarah went down Splash Mountain. I remembered us getting stuck on the train in Magic Kingdom, and you being your very happy self. Nothing could stop your happy smile. Strolling through Epcot Center yesterday, I remembered you and Sarah gotten your passports stamped in each country. I found the restaurant we had dinner at sunset. I remembered you sitting in the lap of Cinderella, Belle, Sleeping Beauty and all the other princesses and Disney characters. We have so many happy memories with you right here. Happy, but also painful because you are not by our side any longer.

It has been 21 months since we parted ways. 21 months. I can operate in life. For many people around me, they would say that I am doing quite well. What might not always be visible on the surface is that the pain can still be so raw. We have still had more times with you than without you. We still know life with you so very well, but yet details are fading. I still can ramble off your daily schedule as if I would jump in at any hour of the day. Yet I don't remember the exact doses of all your medications any longer. The fact is that I don't need to remember your medication schedule by heart anymore.

After 21 months I am still searching for how to live life without you. I am searching for answers. As I was walking on the beach the other day, I was searching for you in the ocean, in the waves, in the sky, and in the sand. I finally found you in the formation of birds that was ever changing. At one point, you formed a heart. You looked so happy surrounded by your peeps.

I reminded myself to be patient with my grief, with my pain. I reminded myself that answers will come with time. I reminded myself that living with you I never knew how the day would end. I never knew what next week, next month would look like. I reminded myself that change is the only constant in life, and I deal with change every day. I reminded myself that answers will come when time is right. A lesson I have to keep reminding my impatient soul of.

Sweet Jacob, it has been wonderful to slow down this week. It has been bittersweet and hard to go down memory lane with you for the last week. It has been fantastic to see your sister and her friend laugh and share lives with us including on this crazy ride Space Mission that got the best of me. Your dad and I know how to relax and vacation together.

Tomorrow night we return to the crazy busy lives we live. I will make sure to not let time pass too long before I visit with you here again.

Sweet Jacob,

I love you to the moon and back,

mom.

I AM BECOMING A STORY TELLER

Dear Jacob,

I am sitting on a plane leaving sunny Los Angeles behind. Tomorrow morning, I wake up in London to fly on to Berlin. It was a hectic week. Work was crazy busy. Your dad was out of town, and I realize how much he does around the house and driving your sister all the places she needs and wants to go. We’re gearing up for our silent auction dinner, and there are little details to take care of each day. I was also gearing up to leave town for two weeks to travel the world.

In the middle of this crazy busy week, I got to tell your story. Not once, several times. I got reminded of the power of storytelling. Storytelling is far more powerful than graphics and statistics. Storytelling paints a picture of why we do things. Stories make people connect. Stories make the world make sense.

As you know, I have been passionately involved with Children’s patient safety work for years now. Five years ago, the hospital re-branded and reinforced their safety program. They made a commitment to zero patient errors. It’s not a small undertake considering the human process behind healthcare, and the thousands of processes each healthcare provider follows each hour of their day. We have lived the healthcare system. We know it’s easy for a human error to sneak in. No one goes in to work thinking they are going to make a mistake, but mistakes and errors do happen. I make them too. Each and every day. I learn from them, and I hope to do a little better the following day.

As part of the patient safety program, we got to tell our story. We were the family featured as part of the Target Zero program. We were the family behind the data, statistics, and graphics. We gave the face of what it meant to have a child at Children’s that we didn’t dare to leave alone in the care of the hospital staff due to the fear that something would go wrong. We were the extra eyes and ears of you, Jacob. The video turned out to be powerful, and has been watched by all employees at Children’s. Each new employee is still watching the video as part of their new employee orientation.

This week, I got to be part of celebrating the five year’s mark of the hospital’s patient safety program and the successes the hospital has achieved in this time. I got to reflect on you and the video that had such an impact on the staff. I started out by asking who remembered the video, and I had a room full of several hundred employees who raised their hands. It was such a testament to you, and the impact you had and continue to have on Children’s. As the Chief Quality Officer said, they continue to cherish you in their daily work. It made my heart complete. It made me understand the power of your life, of your story, Jacob. It made me a very proud mom.

Two days later I was back at Children’s again for Alice 105.9 Radiothon raising funds for Children’s during 24 hours. Joakim and I had recorded your story with the radio station in advance. I now got to hear your end of life story on the radio for the first time, and as I was sitting in the Atrium with a big heavy headset on my head across from Steve from Alice 105.9 and tears were slowly coming down my cheeks. Steve gave me a Kleenex and smiled encouragingly to me. After the montage, he interviewed me. I got to tell all listeners about the fantastic kid you were, and how you taught me to live in the moment. How Children’s it’s still a happy place despite you not being part of it anymore. 

As Steve was interviewing me, one of the hospital’s board member was moved by your story and decided to triple all donations coming in for the rest of the hour. I once again got to witness the power of your story. I got to witness what moves someone to triple all donations by simply hearing about you, Jacob. It was very powerful. That I got to have Sarah, my dearest friend and partner in crime Heather, and your fabulous nurse Ana by my side this afternoon was heartwarming. Text messages and messages on social media from friends listening to your story made me very happy and teary eyed. I felt very supported.

Friday morning, the radio station ran your story again. I had to step away in the middle of a meeting to listen to it one more time. Tears filled both Joakim and my eyes as we were listening to your story together in our kitchen. Joakim gave me a kiss as the story ended. No words, just a message of love and knowing we were the luckiest two people in the world being your parents for ten years. We would have done it no other way. We are the luckiest people in the world. 

Once again an anonymous donor was touched by your story, and decided to triple everyone’s donations for one hour. We just told your story, we didn’t make anything up. Your story touches hearts and people everywhere, and continues to do so. It makes me so very proud knowing I am your lucky mom.

In the middle of busyness this week, I decided to become a story teller. Your story is the most powerful story of all stories of my life, but there are so many more. I decided to use storytelling in my work and outside of work to connect with people. To be real in life, and to never, ever forget the legacy you have left behind. Your story is worth telling each and every day. Thanks for giving me yet a parting gift, the gift of storytelling.

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

Mom.

HAPPY 12TH BIRTHDAY JACOB!

Dear Jacob,

Last night, I had it. I had ended an intense business trip, and I was on my way home. On the plane, I finally relaxed. I grabbed my phone, and started scrolling through old pictures of you. Picture after picture brought back memories of us.  We were a powerful duo. I miss Us so very much. It was a late flight, so the lights were off. In the darkness, the tears were coming. When the seat belt signs are on, there are no Kleenex around.

Today, we took the day off to simply remember you. What a treat, Jacob. Your dad and I went for a long sushi lunch followed by a movie in the middle of the day. We talked about you, and remembered all your beautiful birthdays.

When Sarah came home from school, we took Max for a walk. We ventured up to your memory bench with red and blue balloons in our hands. We wrote our birthday messages to you, and sent up our balloons in the sky. I sat on your bench and followed the balloons as they got smaller, and smaller, and smaller. The sun was starting to set, and it was a magic sky. It was a perfect Jacob moment.

Tonight, we had dinner together and Sarah made sure we had sweets and chocolate. A dear friend baked a cake for your birthday to Sarah's delight. We were simply hanging together, something we always did with you.

Friends and family surrounded us all day with messages, memories, songs, pictures, and gifts. That carried me through the day. Your legacy and memories are powerful. It made me smile through tears. It made me realize how loved you are. It made me realize that we all need a beautiful tribe. A tribe remembering you, and cheering us on.

Happy happy 12th birthday, sweet Jacob!

I love you to the moon and back,

mom.

HELLO BIRTHDAY MONTH

Dear Jacob,

We're once again deep into your birthday month - without you. You would turn twelve in a a week and a half. Twelve. An unimaginable number. A number that makes me feel the distance from your last birthday, your tenth birthday. Soon two years since we got to celebrate your big day. I always wanted to live without regrets when it came to you, Jacob. Your tenth birthday was a fantastic celebration of your life that the experts doomed as early as a few months into your life. It was a superhero birthday, so very fitting to the largest superhero I will ever meet in my entire life.

If you know me well, you know I can make decisions quickly. It's a good thing most of the time. That made my agony even larger this time last year. I just couldn't make up my mind what to do with your first birthday in heaven. How could we celebrate and honor you as our hearts were aching? I had a million ideas, and none felt right. It was so important to me that we remembered and honored you in the most perfect way. 

In the end, I got saved. I didn't know what to do, and your kindergarten teacher came to the rescue. She organized the most beautiful celebration for you. Your school memory bench was installed right in time for your birthday, and the entire school sent up balloons to you to celebrate your life. It was such a moment of love, and I was once again taken back by the impact you had on all the kids at your school. They loved you deeply, Jacob.

After the ceremony at your school, your dad and I went skiing for the day. It was a day of Colorado skiing with a clear blue sky and good snow. I felt free at the top of the mountains, free in the sense that my mind could run free, and you found me on the ski slope.

At night, we celebrated you with Sarah's favorite dinner - steak, potato gratin, and of course cake! I have to admit that I gave out a big sigh of relief as your 11th birthday passed. I had had to gear up for grief for Halloween, Thanksgiving, Christmas, and your birthday. Three long months of celebrations without you.

Christmas was rough again. It will never be the same without you in it. Your death swept away some of the Christmas magic. It will never be quite the same without you in it.

The agony for your birthday has not found me yet. I think I have come more to terms with the fact that you continue to live inside me every second of the day, guiding me through life. It's a powerful force only I know of. I think people might get a glimpse of you as I am standing tall. But my decision making and choices in life are very much guided by all the things you taught me. By you.

What I want more than anything for your birthday is to take a break from the busyness of my life. I want to enjoy a cup of coffee on your memory bench reflecting over you. I want to go skiing, if the weather agrees. I like the idea of flying down the hill. And then there will be cake. Sarah's face lit up when she heard the word cake.

We will find a way to celebrate you for who you will always be.

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

mom.

WHAT I KNOW

Dear Jacob,

We're nearing the end of 2017, and it's time to reflect on the year that is about to end. If I would use one word to describe this year, it is change.

It was the first full year without you, 365 days to be exact. We endured more "first" milestones without you from your birthday to your first year anniversary in heaven. There was a build up to each and every milestone. Unspoken unwanted unfilled expectations of how it would all turn out. In the end, I can say that there was a big sigh of relief as the sun set on June 19th. We made it through the first year without you. We got through a year of "firsts", each bundled up with sadness, happy memories, and void. We got out of bed each and every day. We chose life each and every day. It sounds so simple, but yet so hard when you are no longer with us.

This was the year of us continuing to adjust to a family of three. Jacob, you know us better than anyone, and we have been able to build a new house of cards with three thick walls. Your sister is our absolute highlight. She is a compassionate, warm, funny, smart young woman. Yes, she has her mood swings as any teenager, but more than anything she simply lit my heart each and every day. She makes me smile and laugh. One of my highlights this year was when your dad went off to California for a floor ball tournament, and I got her all to myself for a whole weekend. Best weekend ever!

Our trip to Mexico was a highlight for us three.

Your dad and I have discovered things we love to do together. We have probably done more spontaneous date nights this year than ever before. That is still an odd feeling that we can simply take off. It's still ingrained in us that one of us should stay back home. It's still hits me how crazy it is that we both are laying next to each other in yoga or sweating next to each other in spin class. It's a gift that we like to do things together. The best part is biking together. Your dad is a natural biker, and we loved completing Courage Classic together in memory of you this summer. It's special to share Colorado natures together.

I have had a huge year of learning at work. It seems like every couple of months I was asked to take on more responsibilities. As soon as there was a sense of routine, some new challenges were coming my way. I know I am incredibly lucky to love what I am doing. I see people get stuck at work, and not knowing how to enable a change for themselves. It's a big leap of faith to let go of bad routines and patterns to unravel in the unknown, but it can be so good. My lessons from life with you are helping me tremendously at work. Stress, politics, and drama can't totally get me when I know what is a true emergency and what it truly means to lose what is important in life. It's a calm that can only be learned the hard way. It makes you brave in the middle of chaos. That I got to travel all over Europe and Asia and connect with family and close friends as part of my work was a huge bonus. I leave this year with many fond memories from London to Lisbon to Berlin to Tokyo and Singapore.

Hanging with my dad in Norway.

Seeing Nadia in London.

Meeting Madelon in Lisbon.

Spending time with my sister in Berlin.

What I know today is that the happiest people are people who are happy with what they have. People who are not constantly striving for what they don't have or wanting to be something else than they are. People who are not wanting to change their loved ones to be something they can never be. I am starting to think this is the key to happiness. To simply be happy for what you have. It's not always easy, but that is how you find joy in life. I miss you dearly, Jacob. But I do best on days when I can cherish and feel the tremendous gratefulness that I was the lucky one to be your mom for ten years - rather than the days when I am wondering why we only got ten years together. It's all about if the glass is half full or half empty. All lessons we all know so well, but it's an art to truly live by these simple rules of life. Some of my happiest people come with a history they carry beautifully on their sleeve.

What I know is that losing your child is one of the things people dread more than anything in life. Most people can't even imagine life without their children. They have no problem to tell me that to my face, and I am always wondering what is an appropriate answer to that statement when this is not a theoretical statement but my reality. We all have a journey, a journey guiding us each and every day. My journey was ten wonderful life changing years with you that will continue to guide me each and every day. I can't imagine myself without that legacy, and how you formed me. It's my journey, and I am proud of it. I know people are still afraid to remind me of you, but I live by you in everything I do. I don't want to hide that history or legacy. In fact, I couldn't be more proud of our years together, and what it did to my outlook of life. So, what I know today is to not shy away from friends' and families' past. It's part of who they all are today, and people live and learn by their history. It's all the beautiful wrinkles telling a story of true life. Mine I am forever grateful for.

Tonight, I am counting my blessings and what I know. I am looking into a new year with a curious eye, and hoping for a new year of moments of joy, happiness, and love as I continue to carry you in my heart each and every day.

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

mom.