SPREADING SOME HOLIDAY JOY

Sweet Jacob,

Today was a good day. It was a sweet reminder of what truly matters as well as spreading some holiday joy. Sarah and I volunteered at Snow Pile at Children's Hospital. All patients received an overflow of Christmas gifts today. Parents got their own personal shopper, who helped to pick out presents for all their children. An enormous conference room is converted to a glorious toy store filled with gifts for all ages.

Do you remember when we participated in Snow Pile? I believe it was in 2008. This was the first Christmas you were hospitalized. You had a bad case of pneumonia. We were so hopeful you would come home in time for the holidays, but it was not in your cards that year. I remember a volunteer entering our room to take me to Snow Pile. I remember being surprised to be assigned a personal shopper and entering the large conference room filled with toys. I was behind on my Christmas shopping, so the timing was perfect. I knew Sarah would especially enjoy the extra gifts under the Christmas tree. It spread some light in a stressful day of fever, tired lungs and antibiotics.

Today, Sarah and I were the volunteers entering patients' rooms. We were responsible for the PICU. We know that unit in and out, and the familiar click of the heavy door as I was entering the floor. I know the cleanliness of the floor and the endless rows of monitors in each room. I know the feeling of sleep deprivation bundled with stress and anxiety. I know how hard it is to leave your child, even for a brief moment to go shopping. I know the only thing you want for Christmas is to have your child home again.

As I escorted the parents down to Snow Pile, I got a glimpse in to the lives of the moms and dads.  The hope of being home in time for Christmas despite it being less than a week away. Parents suddenly realizing that life is going on outside of the doors of the PICU. Their smiles as they realized they would get a little break and a little help this year. I was so happy I could relate to their stories. I touched a shoulder of a mom who had not slept all night and suggested her to take a nap this afternoon. I encouraged a dad to ask his physician to explain what the plan for his daugher is. I told a mom about the holiday meal served in the hospital on Christmas Day. It was tidbits from our lives, and little moments of understanding between two parents knowing what is going on inside the hospital walls.

I got a big hug from your physician during your last and final hospital stay. She was so happy to see both Sarah and I. She asked if I was ok. I thought about it before I answered, and I could tell her that I am ok. In fact, it felt great being back in our familiar place and give back. I also got to hug and chat with some of your favorite nurses throughout the day. I did have to take an extra big breathe as I passed the room where you died, but I was doing ok. I am in a place I still call home.

I am so incredibly proud of your sister. She has found her own place at Children's. She knows her people all over the hospital, and she is very good with parents and patients, even when she is surrounded by the sickest children of the hospital. I always knew you were going to give her the gift of compassion. I see it, Jacob.

It was a day of spreading joy and the holiday spirit in a place you introduced to us. It was even better sharing the day with dear friends.

Sweet Jacob, I think of you so much this time of the year. As I put on my favorite leggings this morning, I realized that the pants would be perfect to snuggle up with you in a hospital bed. The simplest of things are what I miss the most. How grateful I am tonight that I got to simply be part of the holiday spirit right in the heart of the hospital.

Jacob,

I love you to the moon and back,

mom.

This is why I love this place.

WE ALL GET TO TELL OUR STORY

It's Thanksgiving week, and snow is surrounding me. This afternoon as the sun was settling the sky was purplish pink against the white silver snow. I felt muscles in my body I didn't know I had from shoveling with my girl today. Our dog was so happy to see the snow he didn't know what to do with himself. We made our first Swedish glögg (gluehwein) of the year after finding a bottle hidden in the kitchen cabinet.

This morning I joined our weekly Mito support call hosted by Miracles for Mito. It's led by our seasoned nurse Marybeth Hollinger specialized in mitochondrial disease. Since my girl was in the kitchen playing rap music on her phone and our dog was running around, I put the call on mute as I was baking and cleaning and listening to this wise community of patients across the country.

The topic of today's call was Thanksgiving. Holidays are not always an easy task when you're managing a chronic disease like mitochondrial disease. Stories unfolded. The typical Thanksgiving meal is full of carbs and not always the easiest food to digest. This means for some of our adult patients they need to skip the meal completely. One woman expressed her thankfulness to simply smell the feast and holding the grandbabies as the family is enjoying their special meal. Some are going to stay in bed today resting their mitochondria for the anticipated stress a holiday has on a mitochondrial body. Every single one knowing family and friends is what truly matters, not what is served at your table or if you eat stuffing and pie.

I love Thanksgiving. It's my favorite American holiday. It's a holiday of friends, family and giving thanks. We celebrate with friends we call family. It's casual, the best meal of the year, long conversations and friendships. What I love the most about the holiday is that everyone independently of age can give thanks. Last year, I had a big lump in my chest. Jacob was sitting in my chest. Despite all gratitude, I didn't even dare to mention his name not knowing what emotions would evolve.  After hearing all stories unfold this morning on the Mito support call, I realized we all get to tell our story. Maybe not every part of your life is perfect, but we all have a magnitude to be grateful for.

Today, I will tell my story. No story is perfect, but it's my story. My holiday is shaded by the empty chair of Jacob, but I have a tight knit family right next to me. They get me, and I get them. I have friends who are standing by us no matter what. I get to enjoy the craziness of the day before Thanksgiving, bake pies and side dishes and hearing girls giggling in my kitchen. I get to savor all the flavors of Thanksgiving and laugh with friends. I get to live. I get to be thankful. I get to tell my story.

With gratitude,

Maria.

IT'S HAPPENING

Sweet Jacob,

It's happening. I am tackling my bucket list. I am turning your blog into a book. It is something I wanted to do in my life time, and I am doing it. I am focusing on the year after we lost you. The year when I realized that grief and love are the same thing. They are inseparable and will always be. Grief would not be hard, if it weren't for the fact that my body aches for you. My arms feek empty without you in them. My lips want to kiss your nose one more time. I miss our life together, and even more I miss my purpose to be your mom.

I am still searching for that larger purpose in life you gave me. I will write about it, and take your readers on a journey on how it is to get through life by missing a body part. That is how it feels to not wake up with you any longer. Life was simpler in many ways. As I am reading what I wrote, I sometimes catch myself with tears in my eyes. It brings back raw feelings.

I was nervous to get back the first round of edits from your editor. I felt as if I were back in school being graded. It is just a touch more personal this time. It is our story, our life together.

I believe it will take me into the spring to fully have this project completed, but it is happening.

Stay tuned.

Jacob,

I love you to the moon and back,

mom.

CELEBRATING OUR WORK

Dear Jacob,

We celebrated the mitochondrial community this weekend. We had a full house at the Field House.

It was a travel back in time to the 80s with leg warmers, neon colors, and oversized sweaters. Decorations were rad, music was fun, and our friends went all the way out for our community. We could not have asked for more.

We also happen to have the best Mitochondrial physician we could ask for. The best one. He speaks to the hearts of a whole room. He makes mitochondrial disease manageable. He cares about his patients. He partners with us. He knows what he can do for his patients, and where Miracles for Mito can step in. A mom squeezed my arm and said: " I want him to be my son's doctor". I could only agree, even if I can not wish this disease on anyone.

Our event brought me back to the 80s. Little did I think about having a family or having a child with mitochondrial disease one day as I lived through my teenage years. Mitochondrial disease changed who I am today. You taught me things about life who can only be lived. You learned me how to be a fire fighter and how to deal with uncertainty and fear. You taught me the incredible lesson on how to go on living despite the incredible loss of you. How to go on living and even find beauty in this world when the most beautiful thing has been ripped out of your heart. They are survival skills. It doesn't mean I won't fall again. It doesn't mean I won't hurt again, but I know how to land on my feet.

I could have walked away from mitochondrial disease and this community three years ago. I could have, but it was never an option. Having lived in the community for ten years and created Miracles for Mito meant that there was no way back. There was only one way forward. I am not going to lie. It is not always easy. I wanted you to be at our first Holiday party. I wanted you to sit next to Santa. I wanted to celebrate another Christmas with you. The thing is that no matter how deep I grieve, it can not take away the smile through tears from another Mito mom. On Saturday, one of our Mito children turned 16. Her family chose to celebrate her sweet sixteen birthday at our silent auction. Not everyone has a full room of people singing happy birthday. Not everyone get to dance to Footlose with your mom's arms wrapped around you. That makes me happy. It makes me happy because you taught me the incredible gift of enjoying each moment and understanding when those moments happen in life. 

It's a horrible disease that hit you, our family, and the families we support. In the middle of the cruelty of this disease, we have created something beautiful. Something that is here to stay, something that is incredibly meaningful, something that will never forget you, Jacob. This is the work of Miracles for Mito. This weekend, I felt the fruits of our hard work. We are making a difference, and I am keeping my promise to you. We will keep fighting the good fight. We will continue to do more.

Jacob, I love you to the moon and back.

Love, mom.

I HEART MY MITOCHONDRIA

Dear Jacob,

Tonight, I am sitting on the balcony of our hotel room with leftover wine and snacks my tribe left behind. The heat and humidity are finally fading away in the air. My feet are up after walking more than 20,000 steps in DC today. Sarah is soaking in the bath tub after walking and biking through the Capital, and seeing all the famous memorials. We're tired and happy. Over the last couple of days, families and physicians came together to share the latest research and treatments for mitochondrial disease. For a disease without cure, it's amazing the hope that you can find in a basement full of  people from around the globe. It's in the air, it's in the smiles and tight hugs, and friendships made over a glass of wine in the bar. It's on our t-shirts "I heart my mitochondria". This is the place where we all share loved ones, and losing a loved one is unfortunately not so rare.

Over dinner tonight, Sarah and I talked about the last couple of days we have spent together in Washington DC. I am literally so proud of your sister. She was dragged to Miracles for Mito's events before even starting kindergarten. She has spent all holidays and school breaks possible at Children's, and knows her way around a hospital room as a seasoned nurse.This week, she volunteered at the national mitochondrial disease conference. What we both enjoyed the most was lobbying at the Capitol. We got to advocate for a new Act funding supplements and nutrition for our Mito community and NIH rare disease research funding. We learned step by step that the Capitol is a maze, and that you can get lost more than once. By the end of the day, we mastered the underground tunnels between the different buildings as we walked between the Senate and the House of Representatives. We walked the talk.

I have proudly worn our "I heart my mitochondria" shirt. Your sister told me that someone came up to her during the conference, and told her she is part of the best non-profit in the country supporting families. I am proud of her, and I could see Sarah is proud of being part of what Heather and I and so many others have created. I wanted you to know this, Jacob. Your sister, who was your absolute favorite person in the whole wide world.

It's not just a logo on a t-shirt. I love the Power house keeping me going. I love that I know more about mitochondria than most people. I have learned to love healthy mitochondria. I have also learned the hard way what it means when your mitochondria are not working. It can be devastating, and take the life of humans we love the most, often at a too early age. It can also mean that after exercising for ten minutes, you have to spend the following three days in bed. It can mean that every doctor doubts your symptoms, and believe that it's all in your head until you meet that genius specialist who starts thinking mitochondria.

Last night, your very own Dr. Cohen got a prestigious award for lifetime achievement to mitochondrial disease. I will never forget that I last minute decided to drive to Wheatridge Recreational Center after you had had a procedure at Children's all day long. I knew the physician was going to talk about mitochondrial disease diagnosis. Right there in the rec center, I knew you had mitochondrial disease. It took five more years to prove what I knew that evening. You were demonstrating all possible symptoms but autism. I talked to Dr. Cohen after the presentation together with his metabolic doctor who was also attending. We talked about you, and we all three agreed that you needed to be started on a mitochondrial cocktail. I remember leaving the gym with a bunch of prescriptions, and a million questions in my head. I also remember leaving with a confirmation of your path and of where we were heading.

I will leave you tonight with a big full heart. The world you introduced me to will forever be mine. It's my people. It's the one place where I am not afraid of the reaction when I utter the words that you are no longer in this world. We hug a little tighter, we squeeze each other hands a little harder. We all know everyone is fighting a battle, and a little compassion and kindness will go a long way. We believe everyone deserves a little happiness. Everyone is fighting some sort of battle in this world.

It has been three long years without you. I wanted to let you know that your sister is ok, and I am so very proud of her.

Sweet Jacob I love you to the moon and back,

mom.

IT COMES IN WAVES

Dear Jacob,

I can't believe how long it has been since I last wrote. I have been thinking I should write, but I can't seem to stop long enough for inspiration to strike. This was the place I came when I needed to make sense to things in life. When I had too much on m plate, and I needed a space to breathe. I wrote about you, and I wrote to you for so very long. Tonight I am thinking back on your 13th birthday running on the beach in Lisbon, Portugal.

Waves breaking in the darkness make you focus on the sound of each wave hitting the sand. It's a sound that is both soothing and powerful. I ran in the rain on your birthday. It was a silent rain, not a down pour, just enough to get wet. Just enough to remember how much you loved the rain. We tried to protect you from rain, since it made you cold and wet. In reality, we should have enjoyed the rain more. I will never forget when we ended up in the pool in a down pour. We had the whole pool to ourselves and you just loved it. I will never forget your happiness when your speech therapist and friend took you outside to feel the rain on your hair, cheeks, and hands. You were in heaven. You sure knew how to enjoy the little things in life.

I sat on the beach before the sunrise, and wrote your name in the beach sand. No words or action could take away the heartache. Just a long day remembering you, and knowing how incredibly hard it is to only be surrounded by memories and not your actual heartbeat and beautiful face. How no wave in the world can wipe away the pain in your heart. How no wave can wipe away the sorrow of a mom's broken heart.

It was a mistake to be away from my people on your birthday. I thought by birthday number three that I maybe would be ok to live in the world. It was not as easy as I thought. I missed you terribly, and I had no one I could really talk to in between business meetings. That made me feel more alone than I have in a very long time. It was a blessing when I finally could call home late at night. I could hear the sound of the grocery bags as your pie was unpacked. The pie to celebrate you. I should have been there. The knowing that the two people I love the most in this world celebrated you together. I was just in a bed very far from home.I know I will not repeat that again.

In the loneliness of grief, I have my tribe. The ones who love you like I do. Voice messages from our friends who love you. Texts and emails of love from friends and family. I cherish each of you who reached out to me on Jacob's 13th birthday. Thank you.

As the beautiful weekend rolled around, I ran along the beach. The sun was up. Families, couples, friends, and dogs were surrounding me. Smiles and sunshine met me on this lazy Saturday morning. My legs are not used to run any longer, but they took me six miles along the beach. It was a slow but heartfelt run. After a shower, I went back to the beach with One Republic pounding from my Beads. I sat on the beach, listened to my music, heard and saw the beauty of the waves and just sat in my grief. I sat and let the tears roll down my eyes. It was exactly what I needed. Beach, Waves, and One Republic.

I will end with a favorite poem of mine:

As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.

Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.

Jacob, you sure left me lots of shipwrecks.I love you to the moon and back,

mom

TO FRIENDSHIP

Dear Jacob,

You know what is the absolute best for my soul? It is spending quality time with friends who love you as much as we do. Friends who truly saw you for who you were as a person. Friends who always treated you as a child. Friends who cherished you every step of the way. Friends who were heartbroken when you caught yet another infection and wrote long get well letters. Friends who baked bread and put on the front porch while we were in the hospital. Friends who brought Chipotle to the hospital and played with you right in the hospital bed. Friends who crafted with you, played dress up, and went swimming and biking with you. They made your life rich. They made your life normal.

We just had a long week of Christmas celebration together with your friends, and it was simply wonderful. It's our kind of people. We drink coffee and wine together. We talk, we walk, we talk, we bake, we drink some more coffee, we laugh, we eat. We talk a little more. We talk about the important things in life and the trivial things. Conversations, food, and togetherness all woven in to beautiful friendship. There is no special "remember Jacob" talk. It is just part of what we all do and say.

I will never forget the first play date you had with Selina and Leandra. You went to preschool with Selina. You were best friends with her and Alyssa. You did anything to be with those two girls. One day, her mom (now my dear friend Nadia) asked if you wanted a playdate at our house. It was the first true play date you had ever had. I was nervous. I was thinking they would play with you for maybe half an hour, and then what? I just didn't know how we would do playdates. How I misjudged you and the girls. It was a playdate of six hours and it was the most beautiful friendship revealing in front of my eyes. I was exhausted from carrying you around the house, but my heart was full from seeing you being so happy. You both taught me so many lessons about friendship.

When you passed and Selina found out you died, she went up to her room and wrote the most sincere letter to you. I will cherish that letter forever. The pastor read it at your memorial service. I know how important friends are to the happiness in my life. Selina and Leandra gave you that quality in life.

On Sunday, Selina and I visited with you in your room. I showed her all the things she had made with and for you. I was amazed by her memory of where and when she had crafted with you. She smiled as she saw pictures of you and her together - in the pool, at the pumpkin patch, at school, at our house and the list goes on and on.

On Christmas Day, we all went up to Flagstaff to visit with you. This is where your ashes are spread. It was cold as the sun was about to set over Boulder. The sky was dramatic as a painting. We took in the beauty of nature and you, Jacob.

Tonight my heart is full. Our Swiss friends are what my heart needs. Thank you, sweet Jacob, for having them all come in to our lives and stay in our lives. They all sweeten this Christmas.

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

mom.