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,

 

 

mom.

A VISIT TO THE PAST

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.

THE THREE MUSKETEERS

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,

mom.

TWO YEARS JACOB...

Dear Jacob,

Two years. We have seen the sun rise and set 730 times since you lost your fight to mitochondrial disease on June 19th, 2016. Some days it feels like it was only yesterday you left us. Some days it feels like forever. There is no rhyme or reason. The only thing I know is that year two was not easier than year one. It was different, but the saying of time heals all wounds is not yet true. We're still early on the journey without you. We're still defining ourselves.

I remember us packing up after your balloon release last year. We have had a wonderful evening with friends who all love you. It was a perfect sun set as your balloons reached the sky. I felt a huge weight off my shoulders. We survived the first year without you. I knew it didn't mean it was going to be easy from now on, but we had made it through all first holidays. We made it through 365 days without you.

What has been the absolute hardest year two is the realization that this is forever. We will live the rest of our lives without you. We are now parenting the memory of you rather than celebrating milestones in your life. It's different. It still hits me like a hard punch in my stomach. I am not sure how long it will take me to fully realize this. It keeps hitting me. It will take time. It will take a lot of time.

You are more alone in your grief year two. The first year, the world was watching over us. Everyone remembered our loss. Year two, our inner circle has continued to watching out for us. We love and cherish our inner circle. If anything, I know I love them even more. They let me talk and remember you with them. They are not afraid to give me an extra hug, share a beautiful memory of you, and simply acknowledge they miss you too. I love them for just that.

Sarah, your dad and I continue to figure ourselves out as a family. We're a house of cards of three instead of four. The constellation is different. It's not always easy to share grief as a family. It can create distance. For me, there are no other two people in the world that I would like to call my family and my home. I do feel in many ways we are closer than ever. They get me, I get them.

We're redefining ourselves. I am not sure how I would otherwise put it. I was so involved in your life each and every day. All those hours are now filled with other stuff. It's not just an easy switch. There are many things that I am still not sure how they will ultimately end up. I have had to learn to not always know. I have had to learn to give myself time, to not rush into decisions (which is so hard for me). After you died, I had to learn how to walk again. I can now walk. Now I am learning to run. Sometimes I reach my destination, other times I fall. It dose give me admiration for the people around me who face life changing challenges, and the resilience and strength I see in human beings. The strength of never giving up.

The topic of children is a common one. There is not a parent who doesn't love to share their children with the world. Some more than others, but it's always there. It's a common subject when there are no other commonalities. People who don't know me well are hesitant to ask about you, to ask about my children. I know. They are afraid they are going to make me upset. That the pure thought of you will leave me shaking to my core.

What I want the world to know is that I think of you each and every day. I was the lucky one to be your mom for a beautiful decade. Your strength, perseverance, and resilience continue to inspire me every day. You taught me so many lessons of life. There are so many stories to tell. There are so many memories to share. And when I least expect it, in the farthest corners of the world, I find the brave souls. The souls that want to get to know you, and to get to know me through you. I cherish those beautiful moments every time it happens. There is not a day I would not share you with the world, my beautiful boy.

Jacob, please keep watching over us. We need you.

Sweet Jacob,

I love you always to the moon and back,

mom.

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.