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.

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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.

A WEEK OF CHANGE

Dear Jacob,

It's Friday night. Your dad and I are sitting outside on the front porch with a glass of wine. It's a little chill in the air, an early reminder of a season change. I can hear the neighborhood children in the background. Sitting outside in my chair on the front porch is such a familiar place, but I do miss the physical Friday fatigue from caring for you, sweet Jacob. I miss not having the baby monitor next to me, so I could keep an eye on you as you were entering dream land. I miss YOU.

I did something this week that I haven't done for seven years. I went back to work full-time. As I was getting closer to Monday, I started to feel a little anxious. I had gotten used to a slower pace allowing for grief and pain. At the same time, I knew I was as ready as I could be. I felt very welcome back at work. I felt a a sense of appreciation. I know I am lucky liking what I do for work, and I have some pretty great colleagues. Many loved and admired you, little Jacob. Many have followed you since you were born. I think you would be proud of my first week back at work.

As I entered the larger world rather than my protected circle of friends who are always on my side, I kept thinking to not lose sight of you. It's so important to keep the life lessons you gave me. You simplified my life in a beautiful way. I always knew what was truly important in life. I want to keep that in my life. Sarah and I have cuddled on the couch without phones and computers. Your dad and I ended up on our yoga mats together one evening, stretching for an hour. I even fell asleep in one of the poses from being so relaxed. We also went together to a beer and biking event. We had a great time, but it still makes me a little guilty when we do enjoy ourselves. I know you are happy for us, but I think it's the bittersweet truth that we would not be able to do this with you in our lives. It comes with a big emotional price tag.

My work at Children's keep me grounded. I got to tell your story at their Strategy retreat at Denver Zoo this week. There were over 100 people in the room, all creative minds thinking about how to make Children's a better place, but they needed to be brought back to the core of why they were all there. They needed to hear your story. I didn't tell them about your endless hospital stays (your dad and I think you had at least 100 hospital stays in your life, but who kept counting?). I told them about what made Children's our second home. I walked them through holidays spent at the hospital, craft parties with friends right in your hospital bed as you were having an EEG done, about us making Dr. E. late for her concert by her visiting with us as we had to make a difficult decision about your medi-port, the famous ICU Spa, and times when the medical team did everything in the power to get you home for Mother's Day or Christmas. I found the courage to show this last picture of you and your sister. I told them about the worst day of my life, the last day we shared together at Children's. I told them about the most empty feeling to walk out of Children's without you.

I first struggled with this picture. It brought back so many sad heartbreaking memories. Something switched this last week, and I just see beauty in this picture now. I know it will make some uncomfortable because of your breathing tube, but I just see the love between you and your Sarah. How I wish you two had had more time together. I know your love for each other will last forever, and it will make your sister do wonderful things that can't be taught, only lived. The price is just so very high.

Thanks for watching over your sister, Jacob. She had a much better week. She settled into a rhythm at school, and she's happy when we pick her up from volleyball practice. She is out with friends watching the high school football game tonight. She's growing up, your sister.

I wanted to show you what your old nanny Jac did for Sarah. Do you remember this favorite t-shirt of yours? She made it into a pillow, and Sarah sleeps with it every night. I love the little message you sneaked in on the back. We love when you leave signs for us.

We also worked on your room, Jacob. I want your room to be a place of sanctuary. A place of peaceful tranquility and introspection. I have really struggled to go through your things. I kept reminding myself that you were too wise to care for material things, but they are connections to you. Bonds of  love and memories. I wanted to have the room ready as I went back to work. I guess it's the organizer in me. I am pretty happy how it turned out. I have many more ideas of what I want to do, but there is a right time for everything. I can't force this work. It will come little by little.

I love when I get to visit with your friends. I visited with Mrs. Nerma this week. She misses you so much. She's in your old classroom every day, and I am sure you give her all kinds of signs. You two had a very special bond. Be gentle with her. Gosh, that school of yours is killing me. There is so much love for you just walking through those doors. What was I thinking dropping off your school picture and then heading in to work? It was not an easy transition between the two worlds I am living in.

Jacob, you are always on my mind. I love when you come and visit with me. I love the signs you leave for me throughout the day. I love all the butterflies you left for me on my run around the lake today.

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

Love, mom.

2 MONTHS, SWEET JACOB

It has been two months today since you passed, sweet Jacob. It feels like an eternity. 62 days, and every 24 hours we add another day to the count of life without you. Day #19 each month will remind me of your last hours here on earth with us. Today, you're sharing the day with your grandpa having a big birthday. I am forever grateful you two had your special moments earlier this year. So many beautiful memories you made together.

I wasn't sure about how the two months mark would be. I have had to learn that I have no idea how any day will go right now. Some days, I do surprisingly well and can even laugh with you about the good times and all the good memories. Sometimes the loss is just unbearable. The fact that I will miss you forever, and will need to find a way to figure out life without you is heart breaking.

Today was going to be about you. I started the day with a breakfast meeting with the new Chair of the Quality & Safety Committee of the Board. He was learning about why it's so important to involve parents in all parts of the hospital work. I got to talk about you, and all the things we learned by caring for you in the hospital for those beautiful ten years.

Right after breakfast, I was talking at the Research Symposium at Children's. You and I were asked to join the Symposium this spring, and we had accepted to tell our story of you furthering research by the five studies you were involved in throughout your life. It felt strange to go without you, but I wanted to honor your life and all the contributions you did to research. You should have seen the teary eyes of the audience as I had to tell them you couldn't be there physically today. I am so fond of your liver doctor, and he gave me a big bear hug as I was walking in. I wanted to be on the panel partly because of the study you did with him. I told them about what your diagnosis meant to us, that I would not put you through another liver biopsy due to the pain you experienced afterwards, and what the mitochondrial drug epi-743 did for you and your ability to find your own voice with the help of a communication device. We got SO many questions, and the panel ran way over time, but I think it meant we did ok. I hope you listened in.

As the panel wrapped up, the organizer announced that the Research Committee had decided to donate a large amount to Miracles for Mito in honor of all the research you contributed to Children's Hospital. Wow, Jacob. The mark you have put on that hospital just keeps amazing me. It gives me the true power to continue telling your story. By simply being you, Jacob, you impacted so many people. I was so surprised and honored to receive this donation on behalf of you.

After our panel, I got to talk to your PICU doctor from the weekend you passed. She wanted to know how we're all doing without you. She said because of you being YOU, this will not be an easy road ahead of us. I couldn't agree more. I got to chat with one of the neurologists taking care of you throughout the years, and he said your passing impacted the whole neurology department. You sure kept them on your toes your whole life, but they also saw the special boy you will always be in our hearts. Jacob, I found so much comfort from being at the hospital talking about you, and feeling that even if you can't physically be there, you're still making an impact. I am only your voice, and I am not even half as cute as you are.

As I came home I had a laundry list of things to do, since I am going back to work on Monday. I decided to take a moment, and watch this 2 minutes video from your balloon release at the top of Flagstaff. It is a beautiful memory. I hope you loved the balloons we sent you that morning:

I also wanted to tell you that today was ok, Jacob. I hope your sister is having a good day too. This week has been incredibly hard on her. Please watch a little extra closely over her as she's encountering so many "firsts" starting high school.

I also wanted to show you the beautiful necklace Sarah and Joakim gave me for my birthday. I am now having a little piece of you close to my heart every day. What a special gift.

Until next time, Jacob.

I love you to the moon and back,
mom.

DEAR JACOB...

Dear Jacob,
I found myself outside your school yesterday. I had to sit in the car for several minutes before I could get out of the car. I shouldn't be in the parking lot, you should have been there, ready to start 4th grade. This big brick building filled with so many wonderful memories. You who loved school more than anything in life. You, who lit up the building with your entrance of bag packs, IPad, oxygen tank and suction machine. You who were always greeted by Mrs. Nerma or Mrs. Lindy to start your day of adventures. This was your happy place, not mine.

I lost it right at "I am here to return Jacob's IPad holder". I could see in the admin's face that she knew who I was, and she didn't know what to say or do. I couldn't hold back my tears. I just lost it right there. Your old school nurse came to the rescue. She quickly took the large stack of thank you cards from your memorial service as well as the IPad holder. She said to not worry, she would take care of it. I needed her to take charge, since I was a mess.

I had promised to visit with your favorite person, so I ventured down to Mrs. Pries' kindergarten classroom. This is where it all began for you four years ago. Mrs. Pries had a rough summer missing you in summer school every day. Did I tell you, she put out your name plate every day in summer school? So, in the middle of tears, I found the person who loves you so very much. We sat on the little kindergarten chairs, and talked about you. She put out her picture of you and Coach Mo. It was so good to sit with her, and remember you together. Mrs. Pries was getting ready for back-to-school night, so I so appreciate her taking time out of her busy day. I needed to remember you right there in her classroom.

I then went to see your Special Ed teacher. Your picture is framed as I get in to her classroom. Your lava project is hanging above your picture frame. This was the last project you did in school, and I know you worked so very hard to get it done in time. You did a great job presenting it to your whole class including showing them all how a volcano works. The lava picture above your beautiful school picture will remind them of you as they enter a new school year.

My sweet boy Jacob, this back-to-school business is so much harder than I thought it would be. But who was I kidding? You loved school more than anyone I know. This was your place to thrive, to be independent, and to have friends. You loved every second of school, and so did your friends. It was amazing to see how you always made friends by simply being you. I will never forget how you distracted the whole second grade by always using your talker when the teacher was trying to explain something to the class, and everyone turning to you to see what you just had said!I know you enjoyed every bit of attention.

Sweet Jacob, I will be in pain every time I see a school bus knowing you're not going to be traveling on one this year. I will mourn that there was never a 4th grade for you. I will feel every bit of the pain, and hoping that somewhere in all of this, there was a purpose and a learning, that I can't see right now. After all, you were always the biggest teacher in the classroom, learning the kids, therapists and teacher the real lessons of life.

I love you to the moon and back,
mom.

PUT ONE FOOT IN FRONT OF THE OTHER

I don't know if you can talk about a honeymoon as part of grief, but we did have a grace period earlier this summer where the deep pain of losing Jacob was smoothed by the beach, riding up steep mountain passes and been swept away by the pulse of the big city. The enormous mountain of grief was divided into smaller manageable chunks by friends never leaving our side, always ready to pick us up wherever we were in the moment. I have a core group of friends checking in on me daily, making sure I can make it through another day, making sure to let me know of the butterfly, rainbow or dragonfly reminding them of our beautiful boy. Messages making me smile and often cry. Friends making sure we find moments of joy, even laughter.

I knew coming back from New York city would be hard. There was no more fun trips waiting for us. It was time to settle at home once again. Our home belonged to Jacob. Every room was adapted for him so he could play right in the middle of his family - both inside and outside. There are reminders of Jacob everywhere in the middle of a very quiet home. I sometimes randomly open a drawer or closet to found another foam pillow, another stack of books or diapers. Sometimes the findings give me a smile, sometimes the findings get a grip of my heart and soul. It's a heart and mind of unpredictability right now.

The endless hours of sorting through Jacob's things have started. I don't wish this on anyone. I just don't. It's exhausting, draining, and so very sad. I keep telling myself Jacob never ever cared about material things. He was happiest surrounded by friends and family. He only asked for two things in his life; a bike and a minion fart blaster. Two things in his ten years long life.

For us, his things have emotional value. They are filled of memories of a past time. Things we cling on to because they keep us close to our boy. I can simply not have his heavy, not so pretty, wheelchair leave its' spot in the kitchen. The chair that took Jacob places, filled with so many good memories. It's parked next to the backyard door, and will probably stay there for a long time until Jacob gives me a sign it can go. The same goes for his hospital bed. It won't leave his room until the right time has come, if ever.

The same thing goes for Miracles for Mito and Children's. It would be easy to walk away from the work when Jacob isn't here any longer, but the cause turned into something so much bigger than our boy over the years. Friendships, passion, and making a difference are still my drivers and inspiration. We always called Children's our second home, and I am just not ready to lose it. I had to drive Sarah down to volunteer last week, and I found myself a comfortable chair up on the second floor overlooking the busy atrium. I could watch the action from a distance, hear the ball machine, and of course a few people still found my little hiding spot. I just felt so very much at home.

There is also a feeling of guilt coming with the new freedom of not having to care for Jacob 24/7. We have a social life again. We can sleep in in the morning, and we can finish dinner whenever we want. Jacob's evening care had to start at 6:30 pm to have a chance to get Jacob in bed in time for his night cocktail of medications. We tailored all parts of our lives for our boy, and we so happily did it. It's hard to beat the purpose of life when you have a child who literally and physically needs you all hours of the day. We knew that his life was dependent on us making it happen. It was sometimes a hard life, but it was also so very gratifying. I would do anything to wake up to that clear vision of life for one more day, to feel in your whole body the simplest but most important lessons of life. To fill that empty hole in my heart craving and longing for our beautiful boy who completed all of our lives.

We are fumbling to find a new normal. We have shitty days, we have "ok" days, and we have glimpses of hope for what the future will hold. We are learning to walk again. We fall, we scratch our hands and knees, we take a few steps forward and a few steps backwards, sometimes we miss the road ahead of us completely, sometimes we're able to even jump or run for a short stretch, and most of all, we love when a friend holds our hand.

The coming weeks will force us to pick up our walk. Sarah is starting high school this week. I worry about her, worrying that something or someone will push her over, hoping that a friend will always be there to pick her up. I know deep inside she's a strong kid, but with a bleeding heart with too large feelings to sometimes put words or sense to. I am going back to work in a week, which will be a good distraction. I like what I do. It will at the same time add stress to my life, and I need to figure out a balance with competing demands which shouldn't be a big issue for a known multi-tasker, but right now it all seems a little overwhelming.

I hope you will come with us on our fumbling walk as we put one foot in front of the other.

Lots of love and gratitude,
Maria.