MEET MAX

Dear Jacob,

I was wondering why I was in a funk today. I felt the tears burning right under the eyelids every time I sat in the car and a song came on. I saw your beautiful face and was thinking what we would be doing right now as my eyes landed on the snow covered mountains. I decided to check my email from work one last time tonight, and there it was. A message from a dear colleague and friend reminding me it is the 19th today, and that she is always thinking of me, but especially on the 19th. It's four months today since you took your last breathe.

I wanted to let you know that there have been lots of laughter and joy in the house in the past week. Sarah finally got her birthday present. She got her Max. Max is a 5 years old shih tzu. He has the sweetest of souls, loves to cuddle and is never far from Sarah's side. We know Max didn't have an easy life before he stole our hearts. The shelter thinks he was stray. He will need some training, patience, and love to fully trust again. He is pretty determined when he sets his mind to it, and loves to run and play. He is not happy about the Halloween decorations taking over the neighborhood yards, and he can't for his life understand why the printer makes noise.

Your sister is carrying around a big smile on her face as she talks about Max. She loves talking about all the funny things he does, and how he just never leaves her side. She is for the first time since you passed away ok to go to bed before us, as long as Max comes with her. She watches TV by herself as long as Max is next to her. She is setting her alarm a little earlier in the mornings, so she has time to walk and feed him. Max has filled a little of the void you made the day you left your sister.

You know, your dad and I were truly the best team Jacob there was. The way we partnered around you was pretty amazing. Together, we always were able to figure out what you needed and what we needed to do. I didn't realize how much I missed the daily text messages: "How is j?" or "Did j poop?" "Did j take a nap?" This is how we communicated all day long when we were not both by your side. The texting has started again. "How is Max?" "Did Max poop?" "How are Max's eyes (he just had eye surgery)?" They are little love messages throughout the day. As always it is your dad who figures out how to best get everything Max needs and how to best discipline him.

So as hard as it is on the evening of October 19th, marking four months without you, Max embraces all that love we carry around. Our house is now full of dog toys and someone waiting right at the door full of joy when we get home. Someone who wants to walk around the lake when I can't take you in your stroller any longer. Someone who wants to sleep next to your sister. Someone we all can rally behind. Someone who simply wants to be,

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

mom.

THERE ARE SIX OF YOU

Dear Jacob,

Life got busy around here, and I didn't get to sit down and write to you lately. It doesn't mean I don't miss you. You are never far from my mind. Sometimes it still hits me that you are truly gone. Sometimes when I see a picture of you, I can still sense your skin, your kissable nose, your hands, your perfect baby feet, and your thick hair. I can hear you vocalizing, especially those really loud vocalizations carrying all through the house when you wanted to shout from the roof tops that you were having a good day. I can hear a Jacob sigh, and it will hit my heart and mind at the same time. How lucky was I to understand the meaning of a Jacob sigh. It meant life was good. Good and simple. I can still remember the taste of wet kisses on your very lovable cheeks and tiny nose. You sometimes tasted a little salty from dried saline solution we used for your nose. And I can see you right in front of me as if you just had decided to escape for a little while.

This picture popped up on my screen saver, and I could sense your soft skin, the weight of your arm and hand, and your tiny little fingers.

As we're adding another month to life without you, I am trying to make sense of your too short life. And sometimes it is like lightning striking from the sky. We found out from one of your Mito doctors that there are now six of you. With your discovered Mito gene, physicians around the world can test for your Jacob gene. Suddenly, you are popping up around the world. You all show similar symptoms of mitochondrial disease. With your discovered gene, your Belgian doctor was also able to discover related genes, and in that group, you are now about twenty known cases world wide. You were always beautifully rare. Slowly over time, there will be more rare "yous" in the world. It makes me a little happy that you contributed your part to mitochondrial research.

As fall has arrived, I have spent more time in your room. I sit on your couch, I put on one of your CDs. I hold your Minion pillow made by your massage therapist, and I let my eyes gaze over all your pictures surrounding me. It often bring tears. It often brings pain. It is my very own sanctuary.

I wanted to let you know of my special visitor coming all the way from Sweden. My magical friend Mari came to visit this past week. When you left us in June, she immediately asked when she should come and visit. It was tempting to ask her to catch the next plane, but I knew that I was going to need things to look forward to this fall.

Mari helped me through the loss of my mom when I was crazy nineteen. Every Sunday night, we went to the same restaurant and bar in Stockholm drinking white wine and eating peanuts. She listened as I talked about my mom until there were no more words. She stood by my side even when I wasn't the best of friends. She never gave up on me. She was my rock.

27 years later, she was standing at DIA (Denver International Airport) with her suitcase full of Swedish candy and coffee to simply be here for me. She's the kind of friend who speaks what I am just formulating in my mind. Laughter and sincerity are all wrapped into one. I got to talk and talk about you, and I got to have fun and laugh at the same time. She visited with you at the top of Flagstaff, and understood the importance of your very own place. Her presence in my life is beautiful and a secret medicine. She simply fills my cup.

I'm grateful for her friendship as fall comes with so many memories of you.

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

mom.

HOUSE OF CARDS

Dear Jacob,

I have had a bunny sitting under your cherry tree all afternoon. He stretched out long, and was so content in the fall sun. I am wondering if you came to visit me. This is where you would hang out on the front lawn while I was working.

When my mom was about to pass away from her terminal cancer and I was too young to lose her, my uncle twirled his beard and tried to comfort me. He talked to me about our house of cards and how we now had to build a new house of cards as my mom would soon leave us. Her fallen card would completely shake our perfectly balanced structure of playing cards. I like that analogy, and I do like the TV series House of Cards.

My House of Cards once again has been shaking to the ground with you leaving us, and we all three are trying to rebuild a new structure of playing cards. We are trying to find that new balance to the best of our abilities.

It has hit me lately that I am only playing with three cards instead of four. Each card holding our family together in that perfect balance. I do struggle to find a perfect balance of life, and finding the good in life again. I know not everything was perfect with you in our lives, but in a way it was perfect, because it was our complete family.

I have also had to wrap my head around the fact that living under such extreme pressure with you for ten years has set its' mark. My firefighting skills and being under extreme stress became my normal. My brain is triggered that way after ten years. I don't know any other way to live. When I wake up during the night, I would have absolutely no problem to start my day at any hour of the night. This is what I did for ten years. I would wake up multiple times every night, and do whatever care was needed or deal with any emergency. That is what my brain knows. This is what I know. You know what, I miss my old life. I miss it because it is what I know. I miss it because I got so very good at it. I miss it because you were my reason to live life that way.

I realize that it's not necessary to live life that way right now, and that I need to retrain my brain. As part of rebuilding our House of Cards, I also need to train my brain for down time, creative time and sleep time. Things that I didn't always have in my life for so long. For a whole decade. It might all sound good to you, but I am scared. I am scared because there are things I don't do well. I know in the down time, I will find grief and I will find you. I know that my tendency is to go, go, go, but I am going to try to carve out down time. I am going to find time to sit in your room, talk to you, and feel the love we so deeply shared. It sometimes hit me how deeply connected we were despite you not being able to communicate all your needs and wishes. I think because of that, we connected on a deeper level where my whole body knew what you needed and what you wanted. It was sometimes a hard place because sometimes I couldn't quite figure out what you needed, but overall I sincerely miss that deep connection. A connection beyond words.

I am hoping with down time that I can find sleep. It has been really hard for me to find good sleep lately, and having to wake up before the sun is up isn't helping. I am not giving up on this one, but it's going to take some time to retrain that brain of mine that never let me sleep for more than a few hours at a time.

Lastly, I want to find more of my creative side again. I was so good at making all pieces of life happen night and day, and I was going strong for often 16-17 hours straight each day. When I finally sat down by the end of the day, I collapsed. My brain was fried. I am hoping that you will guide me here. My writing is one thing I want to make time for. It always makes me feel really good, and it helps me process my grief. I want to make more time for spontaneity and creativity, and I hope with down time, I will find that side again.

I will look for your signs and your guidance as I try to find a new rhythm of life again and building our House of Cards once again. I also believe you will always have a Card in our family. It might be that invisible Card that somehow holds us all together, watching over us, and keeping us moving forward. I need that Card.

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

mom.

P.S. This article was my inspiration: http://www.forbes.com/sites/laurashin/2014/01/15/7-types-of-experience-your-brain-needs-to-function-at-its-best/#5fab783f6181

WRAPPED IN LOVE

OH JACOB,

I have missed writing to you. I got sucked in to the busyness of life, forgetting to prioritize our time together. Tonight, I have an urge to write you, since I have missed telling you about life.

Your sister turned fourteen in the middle of busyness. I was a little worried how her first birthday without you would turn out. In all her life, you only missed one of her birthdays. It was the same year, Gemma got married. You were hanging at Children's with our friend Camilla while we were celebrating Gemma's wedding and Sarah's birthday. All other years, you were always home with her. I remember the year, Sarah decided you could come to her pool party and hang with all her girl friends. I know you had a good time, and you got to stay up way past your bed time. You were all smiles.

This year, I knew we had to do things a little differently, change things up a bit. We decided to go to Breckenridge for her birthday weekend. It was a good choice. The beauty of the mountains and the peaking fall colors surrounded us. We got to relax, swim, walk around town, and enjoy good food and company. I even got in a bike ride through Summit county. It got me to think of you a lot.

More than once, my mind wandered to our Breckenridge get away in October last year. Memories of you being in the outdoor pool, cuddling with you on the couch as we were taking in the beauty of the nature surrounding us, and simply having family time together. That vacation was on your bucket list, and I am so happy we did it when there was still time. We never ever saved anything for tomorrow, we always did things when the opportunity presented itself. How thankful I am for that today.

I think we have started a tradition. You will always give your sister a special gift. You should have seen her face when I gave her your gifts this year.

She opened this one first:

Remember you're team Jacob t-shirt! We presented together at Children's about Team Jacob during an Awards dinner and we received much to our surprise these t-shirts from Amy. Do you also recognize your Minion t-shirt? You always looked stellar in your black and beige t-shirt. I think this was a gift from your grand parents.

And then she got this! This is a true piece of you, a true piece of perfection:

This project started early August. I gathered all your favorite t-shirts and brought them over to our neighbor Charlayne. I found her on the mobile app Nextdoor. I told her our story, and she immediately understood the importance of this piece of art work. This was not just a bunch of t-shirts. Each of your shirt is a treasure, and tells a story about you. Each shirt is filled with memories and love. The shirts still smell like you.  It's you hidden in the middle of fabric, bundle of colors, and softness:

Remember when Sarah's volleyball club was cheering for you when you were sick in the hospital?

Selina's grandma made this shirt for Sarah. It had to join the quilt.

And this was your shirt from Selina's grandma.

Remember nurse Ana going to Carlo's Bakery, and getting you this shirt from Buddy? Just because you're so special.

Your Coyote Ridge shirt! We have so many happy memories from you sporting this shirt in school.

Your Miracles for Mito & Team Jacob shirt put together! It's all about awareness.

and some of your favorite Minions! 

Your bike shirt from nurse Libby! She got you an extra large size, so you wore this shirt for years!

This is our absolute favorite shirt! When daddy got to dress you, he always picked this shirt. The striped shirt in the back is my favorite shirt.

And this is the back of your quilt when Sarah needs to have you close to her.

See how your Minion shirt was incorporated!

And look how perfect it turned out on her bed!

Sweet Jacob, Sarah asked us to have cake with her on the couch watching Friends on her birthday evening. She and I were both cuddling under your special blanket, and it was so very special. It completed her birthday. Thanks for being part of her special day.

I love you to the moon and back,

mom.

P.S. If anyone wants to get in contact with Charlayne for a memory quilt, please let me know. I would gladly share her information. She's simply fantastic.

I FOUND MY RESILIENCE TODAY

Oh Jacob,

I found myself in a very familiar place this morning. I found myself in one of your old hospital rooms on the 9th floor at Children's. I wasn't prepared. I felt the familiar walls close in on me as we were standing outside the unit. I knew there was only a matter of minutes before we would enter the unit, and it was on your side of the 9th floor.

We were doing rounds in our board meeting this morning. I had chosen the Breathing Institute. I love innovation and research when it come to breathing. I was late. The traffic had me stuck on the highway for over an hour. I was rushing into an empty boardroom, only to turn around to take the elevator to the pulmonary clinic. People know what happened to you here. People I don't even know know. They see me, and I can immediately see it in their eyes. They know you're not physically here any longer. As the medical director gave her speech, I could see her eyes slightly shifting as she saw me rushing into the room. To this day, I am amazed with the impact you continue to have on this hospital. Not one department, everywhere. You left your beautiful mark.

After visiting the outpatient clinic, we moved to the Sleep Center. Yes, it was a little uncomfortable to be in the room where you had had numerous sleep studies. The coffee maker had not moved from its place. In the middle of taking in the familiarity of the room, my fascination for future innovation in sleep studies and EEGs took over. So much cool things that will soon be available. A sleep study will be a breeze, maybe even from your own bed? I can't even wait to share with you how an EEG will look like in the future. Remember all the EEGs you battled through?

The cutest kid in the sleep lab on Halloween 2007.

And then we started to move towards the far elevators. No, no, no...We were moving up to the penthouse. I have found comfort being in meeting rooms and the coffee shop at Children's, but I haven't entered your territory, your space. How was it that I hadn't realized this could happen today? We were told we were going to meet with a trach ventilator patient. I felt a sigh when the check in lady wasn't at her desk. I knew she would have asked if you were inpatient again. I wasn't ready to tell her the truth.

And then the big hospital doors opened to the East unit. The sound of the large hospital doors hasn't changed. The smell hasn't changed. The yellow plastic floor is as yellow as before. The sanitizing soap smells the same. The whiteboard is filled with names, just not your name. I had to lean on one of my strongest friends and supporters. It was hitting a little too close to home. His hug gave me the courage to enter the hospital room. Your room looked very differently. It had a crib instead of a regular size bed. The pumps were in different places. The room was decorated with well wishes for this very cute 11 months old boy. And he smiled right at me, and I smiled right back at him. I saw a shimmer of you in his dark brown eyes. Jacob, he has spent his first eleven months of life at Children's. He is almost ready to go home. He is almost ready to enter this world, Jacob.

I felt tears burning when I left your room. I felt relief to be in the hall. I felt comfort from the hugs from your nurses and my rounding team. And right in that moment, I knew you and I still share some resilience. It might not look exactly the way it did when we had major emergencies and long complicated hospital stays to conquer, but it's still there. I made it today. I made it in one piece visiting one of the places that reminds me the most of you. A place with so many mixed feelings. A place of love and healing, a place where we finally lost you.

Jacob, thanks for helping me find my resilience today.

I love you to the moon and back,
mom.

I MISS ME SOME RESILIENCE

Dear Jacob,

Fall is in the air. Fall was your season. I found myself finishing up my workweek on the front porch, and I could picture you on the therapy mat under our cherry tree. Often I simply had you in a t-shirt and diaper, so you could feel the sun against your bare legs. We often moved therapies out on the front lawn. It was your time of the year to enjoy the garden, to go for walks, and to breathe the fresh air. I enjoyed those moments with you so very much. What I would have done for another fall together.

The other week, I found myself outside on the front porch with your night buddy and nurse Libby. The grapefruit beer tasted extra good, and my heart soaked up all the love for you. It's something so comforting to spend time with your inner circle of friends. Your friends who I can simply sit with and cry with. There are no needs for words. We cherish your memory as we feel the void from you not physically being with us. Despite tears and heartache, they are the ones who carry me forward.

Libby still has a hard time understanding you're truly physically not with us any longer. She remembers the endless times you were fighting for your life, and how you always fought through. Sepsis, pneumonia, status epilepticus, bacterial translocation of your gut, so many emergencies and you always came through.

In this new life of mine, I miss the resilience we shared. How we were knocked down by emergencies and worries for your life, and how you always decided to come back stronger than ever. You had an ability to rise rather than letting failure overcome you and drain your resolve. How I miss that strength you gave me. I remember those long nights in the hospital when the nurse woke me up every hour, and how I still got up the minute I heard your breathing change, which meant you were awake. How I got you all ready for the day, doing your vest treatment, double-checking every medication, changing your diapers, repositioning you, and putting on Curious George on your IPad at the same time as I was sipping the weak Hazelnut hospital coffee. And when you were ready for your morning nap, I ran. I ran around the hospital exactly eight times which translated into six miles. I found energy to run no matter how sleep deprived I was. I found the energy to fight for you no matter how tired and worried I was. I found energy to juggle hospital life with family life and work every single day. I found resilience every day to fight for you, to fight for us, to fight for our family.

I miss that extreme strong power taking over my body and mind. I miss your strength. I miss your fighting spirit. I miss you, my sweet Jacob.

As we're taking baby steps to figure out our new normal and figuring out how to be a family of three, I am seeking resilience. I get knocked down by people looking the other way rather than acknowledging what happened to you. I get knocked down by seeing your sister and dad having hard times. I get knocked down by finding a new purpose in life. I get knocked down by the simplicity of this life. I get knocked down by the hours and moments I could have spent with you. But because of you being you, I still find the ability to rise each morning, I get on the phone before the sun rise to talk to my employees in Europe. I might be tired, I might need coffee, but someone needs me on the other line. After early work meetings, your sister needs me to wish her a good day and prepare the simple act of her lunch box. I fill my days. I fill my void. I surround myself with true friends. I surround myself with kindness and love. I seek for a new life honoring everything you taught me, and I search for resilience. I miss me some resilience. I miss you.

I love you to the moon and back,
mom.

PARTING GIFTS

Sweet Jacob,

Another week without you, my sweet boy. As work has become really hectic and occupying my brain during the day, the car ride home has been my place to connect with you. It has hit me several times this week that you are truly, truly gone. It's like the biggest punch to my stomach, to my soul. It's so unbelievably big to take in. The thought of not you being part of my life any longer is unbearable at times. You're not coming back, my sweet Jacob.

I got to read the book "Badger's Parting Gifts" by Susan Varley this week. It's this book about Badger who passes away, and his friends are so sad. As they grieve, they all realize the beautiful parting gifts Badger gave them. I would recommend this book to anyone going through grief independently of age.

.

It got me to think about you, and the gifts you gave me. I was thrown into a new job this week that I haven't done in over ten years. I was winging it as I was diving into the details. I made decisions hoping they were the right ones. I figured things out, and had to say "I don't know" many times. I laughed when things just got a little too crazy. I got very dependent on my coffee as my day started long before the sun was up. But you know what I didn't do. I didn't freak out. I didn't get all worked up. I didn't get all stressed out. You, my friend have taught me what things are truly important in life worth getting worked up about. You taught me what is truly important in life. You taught me what a true crisis, a true emergency is. Remember those times we shared together, and how we came through on the other side.

You gave me the gift of being able to live in the moment. It's something you had to work with me on for a long time, actually probably your whole life. Remember when we were completely in synch getting you ready for the day, and the happiness to simply be together, right there in the moment. You gave me that gift. I am hanging on to that gift, since it's so easy to lose sight of that when life gets busy. My happiest moments where always when I lived fully in the moment with you. So simple, but sometimes so hard.

And you gave me your love for life. Gosh, did you love to live. And you sure knew how to love. This is why this is the hardest gift to receive. It was so much easier to just watch you do what you were best at, but now it's my turn to keep that going. To make sure I give your gift justice. So, each day I try to find the good in life. Thanks for showing me the path on the days colored in grey, and on the days when I feel my eyes tear up at any kind word or the tiniest thought of you. Thanks for your gitf on the nights when I so desperately want to put you to bed and kiss your tiny little nose one more time.

And as hard as it is to be left behind, the one gift that will always keep us together is the love we have for each other. That is the best parting gift I can think of, but also the hardest one to receive - being left behind. This picture showed up on my Facebook feed today. I felt the love just looking at us. Forever.

I love you to the moon and back.
mom.