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.

I NEED ME SOME JACOB LOVE

Dear Jacob,

Christmas is around the corner. It's exactly a week away. The two last weekends have been busy with Christmas parties, A Christmas Carol, Christmas music, baking and gifting. Our house is filled with decorations including your room. Your little tree with your wooden ornaments is up as it has been for as long as I can remember. I love to take Max for walks at nights with all the Christmas lights in the neighborhood. The last weeks have been filled with the things I love about the holidays.

Making Jacob ornaments

Celebrating Advent.

Sarah making a Gingerbread house.

A Christmas Carol

Swedish Lucia

Saffron buns

Homemade gingerbread cookies

Your stocking is up.

Christmas party at Children's

In the middle of celebrating Christmas, I have a void. I don't know any other way to put it. The longing for you is suddenly so much larger and deeper than a regular day or week throughout the year. There are memories of you everywhere. You were part of everything Christmas. It's the time of year we slowed down a little, and made precious memories together. We often were reminded about your fragility. You often came home in time for Christmas from long and frequent hospital stays.We knew what it meant to be thankful, and not take things for granted. How I sometimes miss how difficult and at the same time extremely simple life was with you. I simply miss you.

Yesterday morning I woke up, and I felt rested. It doesn't happen often with a job that gets me up hours before the sun rises. I grabbed my coffee, and ended up on your couch. I really love your room, and I am so happy we have kept it a place for us to remember you. I just took in everything, and let me sit in your memories. I so know that it was your time to go, but it still makes me so sad that we didn't have more time together. I sat in my grief, and suddenly your room was filled with laughter and chatting. Your dad, your sister, and our dog Max all joined me. I had this vision that you were actually sitting right there with us, enjoying our silly conversations and watching our dog  always wanting to lay on your couch. It's his favorite place in the whole house.

Today as I was driving in the car, a thought flashed through my mind. I need me some Jacob love. I see how I gravitate towards people who loved and love you right now. I surround myself with friends who truly got you, who saw you for who you were. I need them because they got you, they get me. As much as I miss you, I do know I am sincerely lucky to be surrounded with Jacob love. It's a powerful force. In fact, one force that keeps me going each and every day.

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

mom.

THE SEASON TO BE THANKFUL

Dear Jacob,

I am finding myself back at Children’s Hospital on this gorgeous Sunday afternoon. I am sitting outside in the sun in only a sweater. There is a slight breeze in the air, and if you would have been here with me, we would have gotten an ice cream to share. You would have been bundled up in blankets, and you would have loved the sun against your cheeks. Christmas lights are up. I know there are here to cheer the families on, but I remember being kind of sad to see the twinkling lights from the hospital window. It meant you were sick, and that we couldn’t enjoy the holidays from home. I also see my familiar running path around the hospital. Today would have been the perfect day for a run around the hospital, and stretching by the big red snake Jake and watching the blue sky. I can’t deny it I do miss this place. There were lots of time I worried about you, sleepless nights, and scary times, but this place always left me with a sense of gratefulness and thanks for being such a big part of our lives.

Today, Sarah is volunteering in the gift shop, and it was my turn to drive her. Due to recent work travel, I haven’t been at the hospital for about six weeks. It’s a pretty long stretch considering that I typically come here for at least one meeting per month, and driving Sarah for her volunteering. There are not many people in the hospital on this Sunday. I know the doctors have tried to send home as many patients as they can for the holiday.

We celebrated our second Thanksgiving without you. Holidays are hard. There is not a Thanksgiving I don’t remember how we celebrated it together. It makes the loss more real. The feeling that you are missing around the table. That imaginable empty chair, and the expectation that we should all be thankful. It seems contradictory, but you taught me that you can be both. There can be moments of grief and sadness and moments of gratefulness and joy. This past holiday I felt both. We have friends we call family, and we had a wonderful day together. After we got home, I took a moment to sit in your room and simply remember all the details of you and your room on a late evening – the sounds, the smells, the lights, and the taste of a wet kiss against your so very kissable cheeks.

This holiday we lost a friend on Thanksgiving. Someone who has been in our lives as long as we have lived in Colorado. We didn’t know she had been battling cancer for years. We only found out the day before Thanksgiving. We were hoping it would be time for us to say our goodbyes this past Friday, but she passed on Thanksgiving. She didn’t want her disease to define her. She wanted to be the person we always had known. I was thinking how supportive she always was of you. I now know that she probably could relate more to you than I ever knew. She will be missed by many, and I think about her dear husband having to find a new normal.

As we go in to another holiday season, I am making myself a promise to slow down a little and remember all the beautiful gifts you gave us. It’s easy to get caught up in the “musts” and "to-dos", and I will try to stay true to myself. Enjoy moments of happiness and joy, reflect on you and let grief find me when needed, and simply be thankful for this crazy life of mine.

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

Mom.

SIGNS OF LIFE

Sweet Jacob,

It has been a long time, since I wrote you. Life has been busy, and work has taken me around Europe once again. As hectic as those trips typically are, you usually found me somewhere in the world. After ten years of not traveling due to not being able to leave you, I can now take you with me anywhere I go. 

I got to spend the weekend in Berlin with your aunt Jenny. It was a weekend that warms my heart. We got to spend time together from morning to late into the night as we explored one of our favorite cities in Europe. We ventured into beautiful Berliner Dom, and we lit a little candle for you. I love to do that as I visit old churches. It gives me peace and a moment to reflect on you.

This time of the year we almost always were at Children’s. I can’t even separate the different years any longer. Were we at Children’s before, during, or after Thanksgiving? It was the toughest season for you. Your last years of life you were hit with bad flare ups of ulcerative colitis that made you so very sick. A memory popped up on my Facebook feed from one of those years you were in the PICU today. You had a big band aid on your neck, and the photo took me right back. The band aid tells me that you were very sick, since they had drawn blood from somewhere else than your medi-port. I never ever liked when they had to go for your neck or head. What lit up the picture was your sister next to you. You two had a very special bond. I had to step away when Sarah was around you because you two didn’t need anyone else – just each other. It makes me tear up just thinking about your special relationship. Sad because it only lasted ten years, happy because it was an incredible sibling love for all your life. 

I read something about grief in a magazine on the plane today. If you ever have lost someone close, you will never put your grief completely behind you. But as time goes by slowly signs of life start to make its’ way back again. It doesn’t happen all at once, but look for those signs, and allow them to enter your life again. 

Going into another holiday season without you, it does feel a little easier this year than last. As much as I know how loaded holidays can be with mixed feelings and missing my “old” life with you, I am looking forward to preparing and celebrating Thanksgiving with dear friends. We now have our tradition that we make “Jacob ornaments” before sitting down for dinner. Crafting was something you loved so much. 

Your sister can’t wait for me to come home, so we can start decorating the house for Christmas, and enjoying our holidays together. As I got off the plane in Newark this afternoon, I had a text that she had started listening to Christmas music. She is becoming my little mini me when it comes to the holidays. Your dad will turn into a very loveable Grinch! 

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

Please, come and find me this holiday season.

Love, mom.

IT HAPPENED IN FRONT OF MY EYES

Dear Jacob,

One of my favorite hours of the week is five to six pm on Sunday evenings. Joakim and I are changing into our sweat pants and we go to yin yoga. We lay on our yoga mats and stretch for an hour. It's often very painful. Sometimes I just want to give out a little scream from a too tight hip flexor or glute muscle. Sitting in an uncomfortable position for several minutes forces relaxation of my mind, and focus on my breathing. You, Jacob, often come and visit me during this hour. I sometimes leave class with tears in my eyes.

This past Sunday, you came and visit with me. I had flashbacks from the last month with you. And in the middle of a deep glute stretch, I had a realization. You were dying in front of my eyes during your last months of life. I refused to see it. I had an explanation for every time you were more tired, and needed that extra one or two naps. You who never spent time sleeping your entire life.

I had an explanation for your edema that got so very bad in the end. I massaged your legs, I massaged your arms, I massaged your hands and feet, but there was just so much extra fluids your body couldn't get rid of. I can still feel your little hand in mine. In the end, there was this worry about how much you were able to pee each day. We measured every diaper. How happy I was when your fluid intake matched your fluid output. There was a sigh of relief when the day ended on plus minus.

I had an explanation for your increased seizures. They were subtle. You were sometimes in and out of them. Maybe there was yet an infection? Maybe your body was under more stress? Maybe, maybe, maybe. There were more questions than answers.

Your second to last hospital stay, I wasn't sure we were ever going to take you home. You had been sleeping for days, and there was no true explanation why. With some medication changes on board, you decided that this was not going to be the end, and we took you home one final time. I will always remember the happiness of rolling you through the atrium of the hospital and out in the summer sun.

We made it at home for six whole days. It was six very stressful days. We were constantly checking labs and talking to nephrology for your kidneys. We struggled to keep your fluid balance in check. We struggled with seizures. We struggled. We really struggled. But we pushed on as we always had done. I do remember your last weekend at home. I remember taking you to the pool for one last time in the water, something you loved so very much. We had a good time in the pool, and then you fell asleep in the shade holding your dad's hand. It was a perfect moment, and I will cherish it forever. Your friend Brittany came to visit. She read to you, and in the middle of the story, you did decide it was time to take a little nap. Nevertheless, you did enjoy story time in the backyard on your last Sunday. Probably my strongest memory from that weekend is Sunday evening. Due to you taking several naps throughout the day, you had no interest in going to bed at night. Sarah was off from school, and the two of you decided to watch Kardashians on your iPad in bed. As I was getting your room ready for the evening, you were suddenly so alert and normal again, and vocalized with your sister as she was holding you tight, laying behind you in bed. It was one of those moments you want to stop time.

Tuesday evening, we were back in the ER. If someone would have said you had another five days to live, I am not sure what I would have thought. It was not at the forefront of my mind that Tuesday evening when I packed our bags to take you in once again. What I did know is that we couldn't take care of you at home with all your edema, kidney problems, and seizures. We watched you like a hawk, on the phone with doctors all the time, and still not feeling we could help you.

We spent the last five days of your life in the PICU. It started out with everyone thinking you had been hit hard by an infection. Scary diagnoses were thrown around. In the middle of possible diagnoses, we thought there might be a reason for why you have acted so very sick lately. It gave us hope, something to hang on to. I also remember at some point that Joakim and I looked at each other in the PICU and we were both thinking how can we safely care for you in the home? Your care had gotten extremely difficult, and we were responsible for monitoring and medicating your very sick body at a level that felt scary at times. We were of course both up for anything as we had always been, but we definitely knew you were very sick. We talked about end of life. We talked about what would happen to you. I felt I was always close to tears at the same time as I was trying to stay strong for you and everyone else.

That last Friday is probably the day when it truly sank in. Your time on earth was nearing an end. You had been sleeping, only waking up for short periods of times, for three days. Some of your labs were still through the roof, but with no explanation. Our favorite attending sat down with us, and said that she was concerned your brain had gotten worse. That could explain the lab values. She wanted to give you the weekend to show her she was wrong, and on Monday we would do another brain MRI. I knew what this all meant. I knew we would do a brain MRI on Monday. I knew the MRI would be much worse. I knew we would be faced with questions of end of life. I knew, I knew, I knew. This is the one thing I had dreaded your whole life, having to make the decision no one should have to make.

But you decided differently. You decided it was your time. No more brain MRIs, no more labs, no more interventions. Your time had come. And once again your showed us who was the boss. You decided, and for that, I am forever grateful.

Sixteen months later, I can start to see how the puzzle pieces fit together at the end. I don't think I could take it fully in as it happened, but your last month we knew. We knew even as we continued to fight.

Sixteen months later, it's easy to get caught up in the busyness of work and life. I don't like when that happens because I don't want to take life for granted. I don't because I know not all of us can take every breathe for granted. This weekend, Colorado has been absolutely stunning. Wherever you look, you see fall beauty. We would have painted pumpkins and gone for a walk in the sun. So, I made it that perfect weekend with family and friends coming in and out, picking pumpkins, working in the yard, and going for long walks. I stayed true to you.

Sweet Jacob, fall is especially hard without you. It was your season. Thanks for sending me butterflies and colorful leaves lately.

Jacob, I love you to the moon and back,

mom.

CALLING YOUR NAME

Sweet Jacob,

Everything got so silent after you passed away. Our house was full of sounds when you were in it. You surrounded yourself with people, the noise of the oxygen tank, the beeping of your feeding pump, the sound of the suction machine. It was never truly silent in our home until the day you were not with us any longer.

When you and your sister were cuddling and hanging out together, there was really no need or room for anyone else. You had your special bond, and you loved when she was with you. You were so happy when Sarah visited you in the hospital. You immediately felt better. You even put up with your sister wanting to watch the Kardashians as long as she did it with you.

Sarah has had to figure out a lot this past year and a half. She has had to figure out how to live without you, her one and only brother. She has had to figure out how to be an only child. She has had to figure out how to live in this world with more knowledge of life than most fifteen years old.

Sarah has done it with grace. I am not saying it was easy. In fact, it was everything but easy. It hurt so much Sarah couldn't always be thinking of you or even mention your name. It was too close to her heart. Her grief had to come little by little.

It hurt me to see her pain. As a mom, I wanted to fix it, fix her, but I knew I had to be patient. I knew I had to simply be there for her. Do it on her terms.

The one thing I have been doing is to keep talking about you. I tell stories about you. I make sure to mention your name often. I make sure our good memories are remembered. I talk about the times we spent in the hospital. I take her and your dad to your bench, and sit and reflect on you, on life. Sarah sometimes smiles at the memories, sometimes she is simply not in the mood to talk. I tell Sarah when I miss you.

A few weeks ago, Sarah started saying your name again. It was like the most natural thing in the world for her. She was telling her friend a story about you. I am not sure what the story was about any longer, but I do remember how my heart filled with this overwhelming feeling of love. Later the same weekend, Sarah started asking some questions about your medical conditions. We talked about it. It was a short conversation, but it was our first mutual conversation about you.

It might not sound like a lot, but there is so much power in hearing and saying your name. I am so happy I kept talking about you. I sometimes felt like a broken record, but I know now, it was the right thing to do.

And Jacob, do know that you're always in our hearts, calling your name or not.

Sweet Jacob,

I love you to the moon and back,

mom.