GETTING ON THAT BIKE AGAIN

Sweet Jacob,

Spring is here! It's light in the morning. It's light at night. The trees are blossom. The air is warm. This was your season to start getting out of the house again after a long winter. Sometimes my mind is wondering how it would be to have another spring with you. We would get the rainbow therapy mat out on the lawn under the cherry tree, and simply hang out together. The simplest things were the best of moments. Just you and me. What I would do to have you in my life again, even for just a brief moment.

There are moments when I feel as I don't have an outer skin. What people say and do hit my heart directly. In those moments, there is no protection, and I can only seek out kindness. Other times, I have slowly learned how to live in this world without you. I have even learned how to find moments of happiness again. We are slowly finding a day to day routine again, but the unpredictability of grief is always there. 

With spring comes biking. I never knew what would happen after you would leave me. Would I still be part of the Mito community? Would the cause feel as important without you in it? Would I have the energy to continue the fight? I just didn't know. Now, I know. There are some things that simply define you, and that carries the beautiful legacy of you. There are so many parts and people of your life that are simply not here anymore, but my bike with your picture in the back is still in my garage. I still know how to pedal. I still know how to get my heart rate up. I still know the power of riding a bike.

So, I am going to ride in memory of you. Your dad will do the same. Your sister and her friends will volunteer for your cause. And together we will continue to ride for all the Mito patients still fighting the good fight. And somewhere in this miserable disease, there are good things happening. I still feel very much at home in the Mito community. It's the people who get me. It's the friends who know what it means to love and lose, and still finding strength to go on. To face another day without you, and still finding beauty in the day.

And out of your disease comes some good things. Through our biking, and being part of team Summits for Samantha benefiting Children's Hospital and specifically the Mitochondrial Clinic, the first clinical trial is taking place in Denver. It gives our local patients a true chance of seeing improvements in their disease progression. Mitochondrial research is happening right here in our backyard. Positive change larger than myself is happening right here. It helps to find that bigger purpose as we're still so very new on this journey without you.

The bike was my outlet for the last couple of years. I felt strong on the bike when I sometimes didn't know what was going to happen to you. I rode on your last day of life.

My fundraising page dedicated to you is up again:

http://support.childrenscoloradofoundation.org/goto/myJacob

 Every single Dollar will benefit children and adults just like you, Jacob. That is a pretty darn good reason to getting on that bike again.

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

mom.

WE MISS YOU, LITTLE PRINCE

Sweet Jacob,

This week, I found myself on spring break. We went to a familiar place. We went to our condo in Breckenridge for some spring skiing, relaxation, and time away. It was the first time in a very long time that we all stayed up in the mountains for the whole week. As late as last year, Joakim and I took turns skiing with Sarah and staying with you in the hospital. It was the hospital stay we discovered your medi-port wasn't working any longer, and I struggled with the decision of surgery. I remember scheduling your medi-port surgery with all departments involved in between hitting the slopes.

Spring break is bringing back lots of memories of you. It's a specific week of the year where I can easily find memories of us together. In the last couple of years, you were not able to come with us to the mountains. You struggled with breathing on high altitude, which led to seizures. We have more than once raced down the mountains straight to Children's ER due to seizures. But we figured out spring break as a family. We took turns vacationing with Sarah, and hanging out with you at home.

In the last couple of years, spring break always meant you came down with something. It was never just a little cold. It meant spending spring break at Children's. Many times in the ICU. It often made me a little sad that we were spending your school break at Children's while it felt as if the world was vacationing. Ironically, I have been sick this spring break. It was just a cold, but it got the best of me. It got me to think of all the times you were so very sick, and how hard you fought every single time. That sure put this nasty cold in perspective.

As I was sitting next to the pool side yesterday scanning the pool and realizing it was completely packed of children, I realized you would never have been able to enjoy the pool right now. It would have been too much splashing and too little space for you and your swim float, I looked up at the sun, and could feel tears coming down my cheeks behind my black sunglasses. You just never know what, why, and when grief will catch you. It's always unpredictable.

Us in that pool in October 2015.

I know you want me to find happiness, Jacob. I know you do. And I have found it this week hanging with your sister and dad. It has been really good to relax, ski, have happy hours, and simply be. It's still amazes me how easy we can travel as a trio. It's still so new to all of us.

Sarah and I took a break from skiing, and went to watch the new movie Beauty and the Beast. It's a beautiful version of the classic Disney movie we watched so many times together. It was one of your sister's absolute favorite movies growing up. Remember all the times we cuddled up on the couch watching Disney movies together? When Sarah wasn't watching Disney, she was playing princess. She put on one of her endless princess dresses and her plastic glass slippers that were impossible to walk in. I reminded Sarah as we were walking out of the movie theater on Sunday what she told me one time: "Mom, you're step mom, Dad is the Beast, Jacob is the Prince, and I am the Princess". Sarah smiled when I reminded her of her own little fairy tale family.

Sarah dropped her glass slippers, smart girl!

Look what we found in the movie theatre in Breck?

It got me to think about our little family. We didn't live a fairy tale, but we sure had a good run together. A really good one. We got really good at living our lives together. It still pains me so very much that we no longer is a family of four, and we miss you so much, Prince Jacob, every single day.

Lots of kisses to you, my Prince.

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

your mom.

I FOUND MYSELF...

Dear Jacob,

I found myself at Children's Hospital this morning, exactly nine months after you passed away at this hospital. I was talking at the Pediatric Excellence Collaborative Summit about collaboration, family engagement and patient advocacy this morning. All things we did so well together. Things I dearly miss today. As I was walking from the hospital garage towards the hospital building, it took me back to your last day at the hospital. Your dad and I walking over to Panera Bread to buy some breakfast after absolutely no sleep overnight. I remember sitting down with your dad outside, and I was crying so hard knowing your end was so very close. I remember thanking your dad for sticking with us through the good and the bad because I knew I could never have done it without him. He said the same thing to me. It was sort of a promise to each other for the future as well. We would stick together no matter what.

The opening of the Conference went well this morning. I realized I didn't really need the notes I brought. I could simply talk from my heart. I was able to get through the speech without crying. After the speech, I sneaked out. I was having birthday breakfast with a dear friend. But before I left for breakfast, I sat down in the atrium. I sat next to the famous ball machine, and just thought about you. A dad was stopping at the ball machine with his little baby boy in a stroller. I was thinking that you were probably the same age when you were introduced to the ball machine the first time. The sound of the balls is distinct. It's a sound I would recognize from any other sound. It brings back so many memories from ten years of life together. As I was sitting still, listening to the balls, I saw a big Minion balloon in the gift shop right across from me. The balloon was waving back and forth, and it was as if you wanted to say "hi mama". So, the tears came. I can't believe I have lived nine whole months without you. It feels surreal. Sometimes I feel as if I watching my life from the sideline. I am wondering how I will ever truly fit in this world again after the tremendous loss of you.

I love being back at Children's. I always feel a strong connection to you at the hospital, but the thought of entering the PICU is still overwhelming. I can't. I might never go in there again or maybe I need that special sign telling me that this is the right time. It's a little to close to home. I have a dear friend with her daughter in the PICU right now. They have had a hell of a week. I wish I could find the strength to enter the doors of the intensive care unit to give her a hug, but I know my limits. She might have to hug me instead of me hugging her. And then there is my other friend. This passionate dad whose son is fighting for his life. Fighting against a tired heart and tired lungs. We're all watching and hoping for a positive update. Hoping for that sign that once again he won the battle over mitochondrial disease.

I am so very sad and mad about your disease right now. I know you will take good care of your friend Robert. I know you boys will make up for the times you spent being sick together. My heart breaks for Robert's parents who tomorrow will wake up to the most dreadful day. There are no good words. There is just so much sadness and heart break.

I am trying so hard to live without you, but lately our community has suffered a lot. Sadly, I know what it means to lose a child. I know it to my core. It's terrible. It makes you question the core values of life. I am once again searching for that larger purpose of life you gave me. That purpose that is just a little bigger than life itself. Because we have touched and lived it together. And now to find it again.

I miss you so incredibly much, my sweet Jacob. Please, keep an eye on all of us tomorrow. I will take a sign or two.

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

mom.

A SANCTUARY

Dear Jacob,

Your room. So full of memories. The four corner of your room is filled with you. You always started and ended your day here. My favorite part of the day was to get you ready after your morning bath. We talked, cuddled, listened to music, and got you ready for the day. I loved rubbing your back, and picking out your outfit for the day. I loved your sighs as you were feeling pampered. I had our morning routine down to a t. I loved that time of the day.

I also loved putting you to bed I loved getting you settled for the night and seeing you drift off to dreamland. Since late summer we have slowly transformed your room. It has been little by little. It was never on a schedule. Sometimes I just added a little picture or a little personal gift from someone. Baby steps.

The one thing I had the hardest to part with was your bed. It was so full of memories. I think I needed a sign that it was time for me to let go of your not so pretty brownish hospital bed. My friend texted me a picture of a set of bookshelves that would fit perfectly in your room. I knew I couldn't buy the bookshelves in the store any longer, and it was the sign I needed. In order to fit them in your room, the bed had to find a new home. I was happy I wasn't home when the bed left your room, but I knew I was ready.

Over the last couple of weeks and months, your room has transformed into a sanctuary. A place where I can sit with a cup of coffee, read the paper or a book, and reflect on you. There are still little things here and there I want to change, but it's pretty much my own little sanctuary.

Do you want to take a look?

Your room

Your urn.

Some of your favorite school work and art projects for display.

There is always a place to sit down and relax. 

There are lots of books and pictures.

Your closet has become a special place of memories.

Some of your favorite toys and school bag.

More of your favorite things in life.

I love this picture of you.

This has become Sarah's spot in your closet. She sometimes does her homework on your bean bag.

View from your closet.

 One of my favorite pieces in your room from dear Brittany. She added some of your favorite quotes you used to tell us.

Hanging in your hideout at night.

It's a process. It's a journey. And I am happy I have found my own little sacred place full of memories of you.

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

mom.

HOW DO YOU KNOW?

Dear Jacob,

This question was placed by a friend this past week. “How do you know when the time has come to let go?” “When do you know it’s the end for your child?”

The answer is “you will know”.

Questions of that sort haunted me many times. It haunted me at night. It haunted me on runs around the hospital. It haunted me in the car to and from the hospital. It haunted me in the shower. It haunted me when you were really sick, and the conversation had turned into quality of life considerations. The questions drove me insane. They made me mad. They made me sad. They made me doubt my judgment at times.

The reason we fought side by side with you for so long is that we saw your fight and love for life. Most importantly, we loved you so very much. We wanted you in our lives. Life without you was hard to even grasp or starting to imagine. It was just a black hole without path or life line. So, we took your lead, hoping we made the right decision at each corner. Making sure regrets weren’t part of the vocabulary.

Sometimes I shouted the question to your dad, and none of us thought we would ever know the answer. How can you know as a mom, as a dad? Dr. E. gave me the answer I needed: “you will know”.

She was right as so many other times. In the last month of your life, I knew. I knew we were nearing the end. I saw the signs. I saw how hard life had become for you. There were not as many good days anymore. There were days of very scary moments. Things we experienced, you don’t wish on any child or parent.

As much as it hurts, I am to this day grateful you made your own decision. You decided when your time had come to let go. As a mom, I didn’t have to make the impossible decision of letting you go. That is the one decision, I think you knew I couldn’t make.

As I was eating breakfast in a hotel in Cambridge this past week, I was able to tell my friend the wise words of Dr. E: “you will know”. It doesn’t make it easier or remove the pain, but it gives you the power to trust your instinct as a mom and as a dad. It might even give you a little peace or comfort in the middle of absolute chaos.

As I am finding a path without you, I try to remember and live as we did together. Some days are easier than others. Sometimes I fall into the trap of caring about the small stuff. The things you and I just didn’t have room for. And as I am once again entering new territory, I try to remember the wise words. I will know.

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

mom.

MEMORIES FROM YOUR BENCH

Sweet Jacob,

It has been awhile, since I have been writing to you. Work has taken me across the pond, and I must admit I enjoy being back in Europe again. I also got to see your best friends' mom. I had a very lovely weekend in London with Nadia. Selina, Leandra, you and your sister were of course part of our conversations. We never stopped chatting.

I wanted to share with you this lovely letter from your friend Jill. I don't think you always liked her coming around. Physical therapy was work for you, but you were also so very proud when you showed us all what you could do.

Dear Jacob,

We found one of your benches today. We jogged around the lake and then toward the park, not exactly sure where we would find the bench with your name. It was windier out than I'd expected, and each time I met with a gust of resistance, I tried to think of you--how hard you fought each bout of sickness, how you pressed back against each blow of Mito disease, and I tried to push forward, just like you did for so many years. We watched the geese fly over the lake, and we stopped to watch ducks bob on the choppy water, and then we headed south toward your bench.

 

 

As we neared the playground, I spotted a bench with a plaque. I saw the minion first and knew this bench was yours. Jonah and I stopped the stroller, and I sat him there, beside your name. I remembered you holding him as a baby when we came to visit you on my maternity leave, and how before he was even born, he loved to play with you.  He would squirm and twirl and flip in my belly when you would sit up against me. You were the third person to ever feel him kick in my tummy, and he would get so incredibly excited every time he felt you sitting up against my belly. 

 

 

I sat down on your bench as Jonah played near you once again, collecting rocks and sticks on the playground. I wished you and I were still sitting together. I wished you were once again leaning against me each week, giving those wonderful Jacob sighs. I wished you were fighting off your mom's or Gemma's or Ana's help to hold your head up. I wished you were still here to meet us at the park today. 

 

And then I realized: you were there.  I could feel your memory in the sunshine on our faces, just like when you and I would sit together outside on nice therapy days. I could hear your reassuring sighs in the now-gentler wind and in the breathless laughter of children climbing and sliding and swinging on the playground. 

 

I sat on your bench and let the tears spill, and then thought about how much you would love swinging with the kids on the playground.  I looked out at your neighborhood and the mountains, and felt so, so grateful for the chance to have been your friend, and for all the days we sat together. I miss you, Jacob. And I'm so glad to have this bench to come and sit with you again. 

 

 

Love always,

Jill

FINDING A PURPOSE

Dear Jacob,

You had a really rough day a year ago. Facebook reminded me with a memory. You were at Children's with pancreatitis, and your medi-port stopped working. It stopped working after seven years of working like clock work. We needed a line study to understand what was going on with your port. A radiologist was called in after hours to find out what was going on with your port. She was awful, no bedside manner, and obviously very irritated to be called in after hours. She didn't care about you as a patient, as a person. When we had problems accessing you, she walked out of the room, and never performed the study. I remember going to bed being very frustrated knowing we would have to go down to radiology first thing in the morning to repeat the study. I was even more worried that the study would reveal that your port didn't work any longer, and that you would need medi-port surgery. I was worried. I was scared of the unknown. But in the middle of uncertainty, here was always a purpose. A purpose to fight for your life, for you. I loved every bit of it, and I miss it now.

I know it sounds crazy. I know many people simply shook their heads when they knew the life we lived. They simply shrugged their shoulders, and couldn't understand how we did it. They wouldn't trade their lives for ours ever. But I sure loved it. I loved being your mom. I loved waking up every day with my first thought being about you. Before I even could think much, I knew I had to get you out of bed, get you ready for the day, get you your medications, give you your bath, do your vest treatment, and the list goes on. You depended on me to live. It was a huge honor and responsibility. It was the most meaningful thing I have ever done in my life, being your mom.

I miss the purpose you gave me. I miss the selfish life I lived. I miss the happiness I shared with you when you had a good day and I do miss fighting for you at Children's. The fighting that kept you alive many more years than anyone would have imagined. I fought for you so hard because I knew what you needed. I fought and we had so many victories together. Times when we could see a doctor or nurse suddenly realizing that they needed to follow this mama's lead. It gave me a huge purpose to know that I could make a difference in your sometimes very hard life. I think I know that I made it better. I loved being your advocate. I loved being your mom.

In my life without you, I am searching for my new purpose. I know I do good things at work. I know I work hard at being the best mom I can to your sister. I know I do my best to be a good wife, be a good friend, doing the right things in life. But those roller coaster days where I had to fight around the clock to keep you alive are not here any longer.

This week, I got to see fruits of our work at Children's enfold. We put on the first Family Partnership Retreat. It took a year and a half. We had a full room of parent partners all invested in Children's and hospital leadership brainstorm about family engagement. The energy in the room was high. The passion and compassion were real. It was about our kids. It was about our families. It was about making Children's Hospital a better place. As I was leading three groups about family engagement at the bedside, I felt how I got carried away. This is what I know. This is what you and I did best. There are so many good things happening at the hospital that will help families now and in the future. I will admit it. I am a little jealous we don't get to experience it. But I did feel the purpose. The purpose of making Children's a better place. A purpose that we're doing good things for a place that continues to matters so much to me.

As I was driving home from this beautiful day at the zoo, I got a phone call that one of your friends had passed away. A big last seizure. This girl paved the way for you in the school system. She paved the way for you at Bal Swan, and later at Coyote Ridge. It makes me breathless thinking what her family is going through right now. It is just so unfair. I did what I know. I texted the mom to let her know I am here for anything she needs, and then I took your dad and Max and walked up to your bench. I just didn't know what else to do. I sat on your bench and tried to understand why this is happening over and over again as the sun set.

And with each sun rise and each sun set, I will look for my purpose. I see it as one of your parting gifts. To not just go through the motions, but to truly live. To truly have a purpose. To truly enjoy life and its beauty when no one else can see it.

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

mom.