Friday, August 19, 2016

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:

video


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.









Tuesday, August 16, 2016

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.

Friday, August 12, 2016

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.





Monday, August 1, 2016

BEST TRAVEL PARTNER

I have been told you need to allow yourself to be happy despite your grief. This past week was good. I had true moments of happiness. It was so good to spend quality time with Sarah. The grief found us, but it didn’t take over our trip. Sarah and I had an afternoon where we had an ugly cry together, but that also felt good, to feel “it” together.



Liberty Island

As I was asked in the fall if I wanted to present in New York City on “patient engagement in patient safety” together with Children’s Chief Medical/Quality Officer, my answer was immediately yes. I love New York, and I also thought it would be the perfect time to introduce Sarah to the Big Apple. We would stay right in the middle of Times Square, and be close to all the action of the city.




When Jacob died, all summer plans were re-evaluated. Would I be ready to present and talk about Jacob publicly five weeks after his passing? How do you know the answer to that question? I didn’t. What I did know is that I didn’t want to disappoint Sarah, and I also wanted to continue working with Children’s. I also saw the presentation as a way to carry on Jacob’s legacy, and the work I have been involved with for so many years. My voice cracked as I had to tell a full room Jacob had passed last month. It was also a weird feeling talking about Jacob in past tense. The presentation went well. My Sarah who is probably my biggest critic said I did "ok". I got many hugs from the audience after the presentation.



Sarah loved the hotel where the conference was hosted as well as the meals included in the conference. She also loved to browse the vendor fair, and pick out some “free stuff”. She even picked out a book written by a PICU nurse she wanted to read. Sarah is a good reader, but she’s just not much into books. For her to find a book she really wanted to read, and for her to get the book signed by the author was a big deal.


When I wasn’t sitting in presentations or presenting, Sarah and I explored the city! We did lots of tourist attractions, since this was Sarah’s first visit to the city. Sarah fell in love with Times Square, the view from Empire State Building, and all little tourist shops. I loved the park High Line. It was a first time visit for me to this park built on old train tracks. It was the perfect getaway in the middle of busy streets. Together we both shared the love of walking through the city, and see where the day would take us. We also got to watch the musical “Wicked”, which we both thought was excellent. We also explored the food of New York. Sarah had everything from pizza, bagels, pretzels, donuts, and street corner hot dogs. She was in heaven.



Enjoying NY pizza.


Wicked!


Relaxing in High Line,


Sarah loving the big donuts at Dough Donuts.


Our last night in Times Square


Brooklyn Bridge


I will miss my travel partner as we get back into our regular routine again. We both could give each other undivided time and attention from the time we woke up until we both hit the pillow at night. We talked, explored, and simply had a really good time together. We both are feeling a little blue after this week, but it’s time to be home again. It feels as if we have been on traveling foot since the end of June. It was also odd for Joakim to be completely alone at home. This has not happened to any of us in ten years’ time. I can only imagine how quiet and lonely our house must have been. Sarah is determined to come back to the city, and we’ll bring Joakim with us next time!




Love, Maria.

P.S. Jacob and I made the August edition of the magazine 5280. I am talking about having a medically fragile child, health care in America, and learning how to speak up. 5280 called me the day after Jacob passed, and wanted to come out and do a photo shoot of both of us for the article. There was no Jacob to take pictures of anymore. It was a very empty feeling. Luckily, they included a picture of us both. Click on the link to read the article. You have to scroll down a bit: http://www.5280.com/magazine/2016/07/how-become-better-healthcare-consumer


Thursday, July 28, 2016

CHILDREN'S AND I

As we're taking one step forward, and also a few steps back, we are redefining the things that became part of our lives because of Jacob. Children's Hospital is one of those things. The hospital became such a big part of all of our lives over the last ten years. I don't miss the sleepless nights and the knot in my stomach from worrying about Jacob when he was really sick, but I do miss the people who cared and loved for our boy. I miss my team Jacob.


I also wonder how my relationship with Children's will evolve without Jacob physically being part of my life anymore. He was always the fuel for me getting involved. I sincerely hope he will continue to be my force, since I have a hard time imaging life without Children's. It's not about the balloon boy, it's about the people who came into our lives because of Jacob.

The past week has been all about Children's, and it has warmed my heart so very much. This past weekend, it was time for Courage Classic. 125 miles through Rocky Mountain. First of all, a big thank you to all of you who supported my ride. I am truly in awe of all donations. We will once again be able to support the Mitochondrial Clinic and Research at Children's Colorado. This in itself is simply fantastic news. This disease needs some serious attention.

I wasn't prepared this year. Bike training was not in the cards after Jacob died. Close to three weeks at sea level didn't help either. But you know what, I couldn't care less. I knew Jacob would get me up every single mountain pass, and so he did. How do you best describe riding the Copper Triangle, three mountain passes and a total of 83 miles? It is a beautiful ride, sometimes the views simply take your breath away. I saw my boy in the beauty surrounding me. I also got short of breath on the first pass, which also reminded me of how hard Jacob worked to breathe and do the things we all take for granted. He literally rode the Copper Triangle every day of his life to simply live, to get through the day. Not once did I hear him complain. That got me up every single hill this weekend.




It was also a time to remember Jacob. This year, we had a Jacob jersey. I loved people asking and commenting about Jacob, and recognizing his picture on my back. Children's PICU has their own biking team. I got many sweaty hugs from doctors and nurses from the PICU team. I very much enjoyed the hug in the porta potty line at the top of Fremont Pass from our favorite nurse practitioner, and riding with one of our favorite nurses from Keystone to Swan Mountain talking about our boy. And then there is Summits for Samantha, 70+ riders strong. I was surrounded by friends and good people all weekend long cheering me on.




I was very happy to have both Joakim and Sarah with me this weekend, which is a first. Joakim always stayed back with Jacob. Sarah had an absolute blast the whole weekend. She had planned this weekend with two of her best friends for months. They got the movie theater all to themselves. They got to help around the house, and also volunteered at aid stations both days. It was definitely the highlight of the summer for her. Joakim got to shuffle the girls around, got to enjoy some down time while we were biking, and the festivities of the weekend. I think the weekend convinced Joakim he will ride himself next year. Even Sarah said she wants to ride next year! That made me very happy.


On Sunday afternoon, Summits for Samantha crossed the finish line together. It's an emotional feeling to cross the finish line every year. You feel a sense of accomplishment. You also feel very little because it's really not about you, it's about the children who can't ride. This year's finish line was teary eyed as one of our Mito children Aislinn came up all the way from Denver to cross the finish line on Jacob's bike. I felt a little piece of Jacob was right there with all of us.






It's a beautiful weekend, every single year. It's a weekend to remember a little girl called Samantha, who have gotten so many of us to rally behind the cause of mitochondrial disease. It's a weekend of hard work and so many good people. And then there is Heather, team captain of Summits for Samantha. She gets us all to decorate our helmets (wilder for some than others), to train and ride, and to raise money for this disease we all hoped we had never heard of, but so desperately need funding and a cure. And as much as I wish losing my boy wasn't ever in my cards, I am so very lucky to have Heather next to me. I couldn't imagine a better friend to take one step at a time with, and who truly gets it. It's the club we never wanted to join, but it's a club we are today forever grateful for.



We made it home Sunday evening with full hearts. It was time to get the dirty bike gear in the laundry, and pack a suitcase for New York! Sarah and I left that very evening on the red eye flight to New York. We arrived early Monday morning to the Big Apple, Sarah and I have had a wonderful week so far (a separate post to follow), and yesterday morning I got to present at the International Patient- and Family Centered Care Conference in New York City with Children's Chief Medical/Quality Officer. The title of our talk was "Engaging Patients/Families in Harm Prevention - from Board to Bedside".


 It was the first time I presented to a full room since Jacob died. I know the content of our presentation inside out, but I seriously didn't know if I would be able to make it through. The reason I really wanted to do it was to honor Jacob, and keep the work going I so strongly believe in. I could hear my voice break as I had to tell the audience that Jacob had passed, and it felt really weird to talk about Jacob in past tense. I am very happy I did it. I love to present, and I think I did pretty well. I got so many hugs from strangers afterwards, and was told I am strong. I'm thinking it's Jacob who still keeps me going. A parent partner from Colorado who attended the conference gave me a little Minion just before we presented. The tears didn't come during the presentation, but they came later as Sarah and I were waiting to board the ferry back from Liberty Island, the feeling of emptiness and sadness. Grief is not always predictable.



Right now, I don't know what the future will hold. It feels like all cards are on the table. I do know I want to keep Children's in my life. I want to continue being a Parent Partner, and see how that will continue to unfold. I want to stay involved.


When we don't present, we ride!

Good night from a New York that never sleeps.


Much love, Maria.



Tuesday, July 19, 2016

FRIENDSHIPS, BALLOONS AND ASHES

Jacob got the best birthday gift this year. As we were Skyping with his friends Selina and Leandra in Switzerland, we found out they were going to come and visit him this summer! Jacob never cared about anything material, but he did care about his two Swiss friends deeply. We decided that the best would be for them all to move in for a few days, since Jacob would have an easier time to hang out with the girls in his own home. What I would do to be able to write that beautiful story tonight.

As things happened, Jacob passed away about ten days before his friends came to town. Selina wrote the most beautiful letter to Jacob as she found out he passed. Pastor Gregg shared her letter with everyone at Jacob's memorial service. This weekend, she gave me the letter in person. How I will cherish that letter for the rest of my life. It's a priceless gift from a beautiful soul who came in to our lives because of Jacob.


Selina had told her mom that she thought it was going to be a little weird to come and stay at Jacob's house when Jacob wasn't going to be here any longer. I had actually been thinking the same. The little guy would be greatly missed as our two families got together for the weekend.

But what a beautiful weekend it was for all of us. Sarah loved spending as much time as she possibly could with Selina and Leandra. Those two girls stole her heart long time ago. The pool was always our favorite hangout place together, so we did spend hours at the pool this time as well. It was the perfect transition from beach to home for her. Joakim got to share his whiskey with Andre as we all shared crazy travel stories throughout the evenings. And I got to talk about Jacob. Our kids shared so many good years together, and it was so healing to my heart to remember all those times together with Nadia. I just couldn't stop talking about him, and she just listened and chimed in. The best kind of friend.




Since they all missed Jacob's memorial service and Celebration of Life, I wanted to do something together with them in memory of Jacob. I knew I wanted to spread some of Jacob's ashes at the top of Flagstaff Mountain, and what better way than sharing the moment with close friends. I have a love hate relationship with Flagstaff Mountain. I have had times when I hardly made it to the top, but the beauty and the satisfaction of greeting the mail boxes at the top of Flagstaff always keep me coming back. I have also gained clarity in decisions I had to make for Jacob as I pedaled up that steep hill. Things I just couldn't wrap my head around suddenly seemed clear after a good hour of climbing. It was my escape many times.

It was a beautiful morning in Boulder. The sky was blue, the sun was out, but it wasn't too warm yet. Three biking friends decided to ride up Flagstaff with me. Gemma, who hasn't been on a bike for three years, decided to conquer the mountain with us. Only sweet Jacob was able to get her up that hill. Having been on sea level and only a few training rides under my belt this year, it was a tough ride for me too. Jacob as so many other times got me up that mountain. I had his name running in my head the whole way up.


We then met up at Flagstaff Amphitheater for coffee and breakfast. Food tastes so good after a hard, sweaty ride. We all took in the beautiful morning as we wrote our messages to Jacob on the balloons we were sending off to him. We then spread Jacob's ashes over the lookout of the Amphitheater. We all took a moment to remember Jacob and found the perfect spots for spreading his ashes. We now all have a place to come back to and remember our boy. If you ever have your ways to Boulder, pass Chautauqua park and simply continue on Baseline road all the way up to Flagstaff Amphitheater. I will meet you up there any time!
















I'm ending this post with some of my favorite pics of Jacob and Selina, just because they were so darn cute together!







One month without our boy today. There are no words for how much we love and miss him. The one thing I know is that we wouldn't have survived this first month without the enormous outpouring of love, kindness, and support.

With sincere gratitude,
Maria.