I FOUND MYSELF AT CHURCH...

I grow up with music in my home. My mom sang in the Royal Stockholm philharmonic choir and played the grand piano with grace. My dad played the violin in at least two orchestras at a time. My sister went to music school after music school, sang in choirs and played the piano. Classical music was always part of our home and our social life. I was very young visiting the opera for the first time, and have attended endless operas and classical concerts in my life. When other families went on vacation to the beach, we ventured off to classical music and opera festivals in Europe. I always sang in a choir and played the piano, but often felt my passion was a little less than the rest of my family. In fact as a teenager, I definitely revolted against piano play and Wagner operas.

As an adult, I am forever thankful for my childhood and for my parents giving me the gift of music. There are few things that gives me as much comfort as music. When my mom passed away after battling cancer, I listened to classical music all the time. Mozart's Requiem and Vivaldi's Four Seasons went warm on my walkman CD player as I was visiting my mother's grave.

Saturday evening, I found myself in a church listening to Bach's Christmas Oratorio. I love Bach's Christmas Oratorio. The CD always finds me in November, and goes warm in my car or in the kitchen over and over again. This year I got to listen to the whole Oratorio in person. It was the absolute best medicine for my heart. I love the holidays. I love everything that comes with Christmas. This year, my heart has been broken for some very dear families. My heart breaks for the mom still trying to find a way to get through each day without her precious son, my heart breaks for the two families deciding to withdraw care from their very dear children in the PICU tonight. There are no words of comfort. There are no words of reason. There is just sadness and a lot of grief, right smack in the middle of this holiday.

I have had candles lit in my house all day, I have listened to music all day, I have reached out with words of comfort, and I have been letting my family know how much I love them.

Tomorrow, we will celebrate our Swedish Christmas with many friends around the dinner table. It is one of my favorite days of the year, and I will be keeping my dear families and friends in my heart.

Love, Maria.

A BEER INFECTION

This sure was a Children's Hospital week. Every day this week I put my foot in the hospital. Monday afternoon, we ended up in the Emergency Room with a Jacob who didn't feel well. The doctors didn't find any source of infection, so we were sent home again. This is the first time in seven (!) years we didn't get admitted from the Emergency Room. 

Jacob did get a hefty dose of IV steroids in the ER, which made him very jittery! The adrenaline kick made him stay up literally ALL night! That made for a very sleepy boy the following day. He repeated this pattern for two days. I wasn't overly worried about him sleeping so much during the day, since I knew he was up partying with his night nurse at night. We had also been told that his labs indicated a viral infection.

Well, Wednesday night he did sleep all night, but had no desire to wake up. He was extremely lethargic, and we could see he didn't feel well at all. Dr. E. didn't have an opening in Clinic, so it was time to pack the bags and head to the Emergency Room for a second time this week. 

This time we didn't get as lucky...Jacob got admitted yesterday afternoon. The verdict was pneumonia. Antibiotics and IV steroids were started. On Wednesday, Jacob had a neurology appointment. We left the hospital just as the sun started to set and all the Christmas lights were on outside the hospital. It's beautiful with all the colored lights, and it was a warm breeze in the air. I took it all in, and said to Jacob's nurse Ana that I typically never enjoy the lights at Children's, since I always watch them from a hospital room knowing I would like to be home. Well, last night I did just that. I was watching the lights blinking outside in the dark as I was winding down from a very busy day.

Today, Jacob and I started our day a little shy of 5 am. Nothing unusual for our boy. At 6 am, I was the first in line for the coffee shop. At 7 am, I was on a conference call for work. It was then time to do Jacob's morning care and I went for a run around the hospital. It turned out to be a social run today, ran into too many familiar faces around the hospital. That made me smile as I started up my run each time after hugging someone I have gotten to know on our journey. It was then time to sign 20+ Christmas cards for our Family Advisory Holiday lunch, round with Jacob's medical team, and jump in the shower. It was clear on rounds that the team wasn't sure Jacob had a pneumonia. They wanted to continue looking for a source of infection before settling on pneumonia. Joakim and I had the same suspicion. It is always good when we're all on the same page.

For lunch I traded with Joakim, so I could attend the Family Advisory Holiday luncheon and my last meeting as the Council Chair. It's a great group of passionate parents and hospital leadership. Many of us have worked together for years, so it's always so great to see each other. The last meeting of the year, we always stop to celebrate our successes as well as start planning the work for the year ahead. I'm excited about the new parents I get to work with in the new year, and the new Chair I have taken on driving the work around Parents on Committees throughout the hospital. I always find energy in starting up new projects.

And Jacob had a better day! He was more awake today, but he does need his bi-pap to help with breathing throughout the day. He also needs more rest than normal. We also found out this afternoon that Jacob doesn't have pneumonia. He has a confirmed case of the coronavirus. Sarah said immediately "does Jacob have a beer infection?" Well, Jacob is far from Mexican beer tonight, but it feels so good to know what the source of his infection is. Jacob came down with coronavirus during spring break, and his clinical picture is very similar to that time.

Tonight, I would have been happy to simply end up on the couch with my girl. Sarah thought differently, and really wanted to attend the Swedish IKEA Christmas dinner. We ventured down to IKEA with friends, and we had many good laughs and lots of delicious food. The kids cracked up as Camilla and I got deep into our singing, reminiscing Christmases from growing up in Sweden.

Tonight my eyes are hurting from too little sleep, but I'm going to bed with some optimism we can bring our Jacob home in a couple of days.

Until then. Love, Maria.

I WANT A MINION FART BLASTER FOR CHRISTMAS

Tonight was a very special night. Jacob got to meet Santa. When Jacob's speech therapist heard that Jacob was going to see Santa she created a special "page" on his talker, so he had a way to talk to Santa.

Jacob loves getting out of the house, so going to Gemma's tonight was a big deal. It got even more exciting as Santa came for a visit on his fire truck!

Each child got their time with Santa to let him know what they wanted for Christmas. Since Jacob was in his wheelchair he had to wait for his turn. He was NOT happy! As the other kids took their turn, Jacob was trying to dialogue with Santa: "Merry Christmas", " Hi Santa", "Can we open presents now, please?". Santa was busy listening to the other kids' wishes, and Jacob did not like it. Over and over again, he said "I don't like it". Having been impatient all my life, I so could relate to my boy...

At last, it was Jacob's turn. Jacob very quickly told Santa that he "wants a minion fart blaster for Christmas, please". We knew Santa had many stops tonight, but he just stopped in his steps to talk to Jacob. When Jacob realized he had Santa's ear, he quickly moved out of his "Christmas page", and went to his favorite page when he gets to talk about himself. He told Santa twice that his name is Jacob, so it was clear who the fart blaster needed to go to. He also wanted to ask Santa some questions and made sure he said hi. Santa made sure to tell Jacob what a special boy he is and how brave he is. Jacob loved his special time with Santa.

There are moments like tonight I just have to stop in my steps. It was incredible to watch Jacob interact with Santa. I also have to say I was just a little proud of my son making sure he got enough time with Santa. He definitely advocated for himself.

And here they all are...kids are kids...all happy and excited to see Santa!

Love, Maria.

SO MUCH LOVE

It's me. It's time for a little update. I have had a wonderful holiday with my family. This year, we have a very special friend visiting all the way from the Netherlands. I hear mom laughing with Madelon all the time. They are so alike! You should have seen the two of them decorating our Christmas tree. It took them forever before they were happy with the decorations. It was funny watching the two of them.

Since I have been doing really well health wise, we decided to spend Thanksgiving with close friends. It was a day full of delicious food and great company. I love when my family slows down, and we all just hang out together. Before we started the dinner, everyone gave thanks. It was hard to follow me after I simply said "I love you" to everyone with the help of my talker. It was a beautiful day with snowflakes slowly coming down all day long.

I just started homeschooling. I have never been in school as long as this fall. We had a very warm fall which kept the germs away. I had a really good run with my 3rd grade teacher, my paras and my classmates this year. My favorite subject is Art. I also like my teacher who is now coming to my house. She loves Broncos, and is a kick! I also get to Skype with my class twice a week to keep in touch over the winter. This week, I also get to go on a field trip with my class. With me being home more, we're increasing my therapies. I'm now doing physical and speech therapy twice a week, music and massage every week, and art therapy every second week. I am a busy bee, and that's how I like to roll.

We're now entering the holiday season. Did I tell you that my family goes a little nuts around here? I think my sister is following in my mom's foot steps when it comes to loving the holidays. Every room is beautifully decorated, and soon the baking and festivities will start around here. I just love to hang out with everyone and to enjoy each moment.

There is so much to be thankful for, but most of all my health right now. I know it can change any time, but for now I enjoy a time of no colitis, no seizures, and no respiratory infections. Not a small feat in my life.

With so much love,

Jacob.

GRATEFULNESS

Gratefulness is the quality of being grateful. 

You know that feeling when you sit on the beach and the waves come over your feet, then your legs and maybe if you're brave, the rest of your body. That is how gratitude feels in my world right now. It is not a constant feeling, but it comes like waves over me. Some waves stay, some waves roll over me until the next wave comes. I am in a place of gratefulness right now. I sometimes just stop in my steps and let it sink in. Thanksgiving is a good time for reflection and gratitude. 

Social media of all sources have reminded me daily about how trying November typically is for our family. I get daily memories on Facebook, and as far back as 2009 I get to read about difficult long hospital stays, seizures not wanting to stop, colitis flare ups, and pictures of Jacob in a hospital bed. Sometimes when I look back, I'm thinking "how did we do it"? The answer is that this is Jacob's journey, and we're just here for the ride to love and support our boy as much as we possibly can. It's simple, and easy in so many ways.

It feels a little unreal that Jacob is doing so well right now. He looks so good, he smiles and is quite the chatterbox. The fact that Joakim and I even took a little vacation last week feels like a big step. I'm thinking about doctors putting all their cards on a worsen brain MRI this summer. I'm hoping that this is the time they realize that their crystal ball is broken. This is Jacob's life, and only Jacob's. We have no guarantees for tomorrow, but we will sure enjoy today. 

Gratitude shifts your focus from what your life lacks to the abundance that is already present. I also believe that deep gratitude comes not just from a happy place. Gratitude comes from a place of truly cherishing what we have today, our whole family. Not something we can take for granted every day. Our Mito community has also had a rough time lately, and it would be an under statement to say it doesn't hit close to home. I live and breathe this disease, both the good and the bad.

I leave you with this picture. I stopped in my steps to capture a happy Jacob today. Simple gratefulness.

"Love the moment, and the energy of that moment will spread beyond all boundaries."

Love, Maria.

GOOD PEOPLE IN THE MIDDLE OF GRIEF

Tonight, sweet Caleb is sharing my refrigerator space with Samantha. Samantha's picture from her memorial service has been hanging on our fridge for over five years. Tonight, Caleb's picture is up too.

Today was a heavy day. A day that is the reality of Mitochondrial disease. On Monday, our community lost beautiful sweet Caleb to Alper's disease. Caleb only got to live eight years before his disease took him. Today was his memorial service. I have only gone to three funerals in the US, and all of them were for children who lost their lives too early. As sad as it is to say goodbye to a child, today I knew that there were no other place for me to be. This is what it means to be part of the Mito community. Memorial services will happen, and moms and dads will be grieving their lost children for the rest of their lives including us one day.

It was a beautiful service. We all got to write down our favorite memory of Caleb for mom Kelsi to take home. We got to hear beautiful words spoken about Caleb and see so many happy photos of  Caleb and his family. You could see the special bond between Kelsi and Caleb in every picture. Caleb's primary care physician, also one of Jacob's doctors, was crying throughout the whole service. And so did my Mito friends Heather and Angela. We were crying, holding hands, and hugging Kelsi and hoping that a little of the strength of our hugs would keep her strong as she's grieving.

After the memorial service, we walked along Colorado Boulevard looking for a place who would serve us wine in the middle of the afternoon. We found a place. We had wine, we had pizza, we had chocolate chip cookies. We ate and we drank, and we had good, serious, honest conversations. A few more tears were shed as we shared our fears and honest opinions about the shitty things coming with this disease. Things we have to face, things we have to live with. We shared warm thoughts for Kelsi, and hoping for strength tonight, tomorrow, and every hour from there on.

As we were hugging one final time in the parking lot, Heather said "you're good people". I was thinking that in the middle of this disease, this disease I don't wish on anyone, there are many very good people. Good people will help you through a heavy day, and good people will keep you going as grief hits.

Love, Maria.

MY KID IS AMAZING!

I know...You're not supposed to brag about your kids. It will definitely rub people the wrong way. I'm finally sitting down for the first time today, and my heart is full. I'm having a glass of red wine, and thinking you should never ever give up. And yes, I am going to brag a little about Jacob, just because he's pretty darn amazing.

In August, we stopped CBD (cannabidiol) due to it possibly causing Jacob's abnormal liver values. As we stopped CBD, Jacob's myoclonus came back in full force. Myoclonus is a movement disorder, little rhythmic movements in Jacob's body. It especially attacked his right foot this time. Something that we really wouldn't care about if it weren't for the fact that Jacob communicates by using his right foot. As Jacob listens to the different options on his communication device, he clicks with his right foot when he wants to select an option. With his increased myoclonus, it has been difficult to differentiate between Jacob's purposeful clicks and his clicks caused by myoclonus. We have witnessed Jacob's frustration as he has made a selection on his communication device to simply be clicked out of the screen due to an involuntary movement of his foot.

We knew we had to try something, and our former speech therapist Brittany recommended an OT, Michelle Lange, who specializes in switch access for children like Jacob. She is booked out for weeks, and she's charging you an arm and a leg for her service, but oh man is she absolutely fantastic. I was sitting in my kitchen with a cup of coffee for almost two hours watching how she worked with Jacob from head to toe to figure out what is the best access point for his talker. She figured out that Jacob can communicate by moving his head! She found the right head rest, the right switch, and the right accurate position for our boy. I watched her talent unfold in my kitchen, and I was simply in awe of her.

And then there is our boy. Jacob is sick. He has a pretty bad cold. He's fighting it from home, which is a little victory all in itself. He worked so incredibly hard with her. He was so tired at the end, but kept doing what she asked him to do. In the end, the only thing that kept Jacob going was his switch activated Minion Kevin!

When it was time for Michelle to leave, I took Jacob out of the wheel chair to be met by one of Jacob's enormous diapers...I am not going to go into details, but it was everywhere from the wheel chair, to the floor, and all over Jacob and I. She didn't even lift an eyebrow. She just estimated the cleanup time to half an hour to an hour. She was right on the time estimate, but who cares about poop when Jacob has his voice back again?

Love, Maria.