A TREE WITH A HISTORY

Dear Jacob,

I found myself on our front porch tonight. It's the first evening it feels warm enough to sit outside in tank top, shorts and bare feet. It's a familiar place looking out over our neighborhood street, chatting with a passing neighbor, and hearing distance voices and laughter. I like to bring my laptop out here, browse the Internet and blog. I can hear the sound of your buzzing monitor as if it were just yesterday it was sitting on the table next to me. I knew what every little sound meant on that monitor, and very seldom did I have to look on the screen to know if you were awake or asleep. I knew the ins and outs of your breaths when you were awake, and when you were asleep.

Tonight, I am taking in the crab apple tree to the left of me. This tree has been with us since we moved in to this house. Our beautiful tree now has a disease, and the recommendation is that we cut it down. The tree guy took me by surprise when he told me the tree had to go. I was hoping for a magical spray to take care of the dead branches and sad looking tree. I had to search for words, and then gathered my thoughts and quickly asked: "are you sure there is nothing you can do to save the tree?" He shook his head, and very quickly went into why he didn't think your tree could survive. I shut the door, and thought that there must be another tree guy who still think there is a way to save our tree.

I took a step in to the house, and started to reflect why it hit me so hard. It's a tree with a history. The tree is a part of our lives together. I have so many memories from getting your therapy mat and your pillows out on the front lawn under the apple tree. You would simply take in your surroundings while I was working or we would be doing therapy in the shade of the tree branches. We have also enjoyed endless times together on the front porch in the shade of the tree. I have been sitting with you on my lap, and once again taking a pictures of the blooming tree being the ultimate sign that spring had come once again. I also loved sitting on your couch in your room and having the view of pink flowers right outside your window. Many times we faced your chair towards the mountain, so you could take in the view.

When Sarah came home from school, I told her about the tree. She reacted the same way I did. It was her climbing tree when she grew up. It had taken lots of courage and many attempts to get to the top of that tree. Many times I had to run out to see how far she had climbed. A piece of her childhood was also tied to our apple tree.

We're still hoping for that miracle. That someone will be able to save our tree of memories.

A friend put this bow in memory of you right after you passed. I love seeing the green bow every time I turn in to our street.

As we enter May, there start to be daily memories of what we did exactly on certain days this time last year. By this time, you had broken your leg. Maybe not a big deal by itself, but it set you back as your lungs, kidneys and brain started to act up. Your body started to show signs of being very tired. I can to this day feel the knot I had in my stomach when I didn't know if you were in pain or not, when I didn't know what caused your pain, when I didn't know. We saw the subtle signs, but was hoping for that miracle. That miracle that things would be ok again. May is a busy month with end of school year activities, busy days at work, and other activities. It's a good balance, but I will remember to also find time to reflect on you and those precious, but sometimes so hard, last weeks of your life. It's time to find space and sit in that grief. It's unreal to me that we're in less than two months have been without you for a year. A year of "firsts" will be over, but that's all there truly is.There will never be a day when you're not filling my heart.

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

mom.

A DAY TO REMEMBER YOU

Dear Jacob,

I am at peace tonight. I had a beautiful, peaceful day remembering you. Your dad and I ventured out on the bike path to Boulder for the first time. We got to Boulder a little quicker than we thought, and we realized we had some more time we could kill before heading back home. We decided to bike up to Flagstaff amphitheater to visit with you. That hill always gets to me, and as it got hard I ran your name through my mind. I know I always find peace at the top of that mountain.

As we got up to your special place, sweaty and with tired legs, I saw a beautiful vase of flowers at the center of the amphitheater. A wedding was about to happen. We only had a few minutes to visit with you in order to not disrupt the wedding ceremony. I dangled my legs over the edge, and took in the view, took in the smells of spring morning, and felt as I was sitting on top of the world seeing the road we just climbed up in the far distance. I took in all the places where I know your ashes are. This place will always be a piece of you, and I am so very happy that this is your very special place. It gives me so much peace.

We got home a little later from the bike ride than I expected, so we rushed over to Children's for their memorial service honoring the children who have passed. We got a seat in the back, and quickly waved to a dear friend who is on this journey with us. If I would use one word to describe today's service it is heartfelt. Everyone spoke from their heart, and having a personal relationship with so many of them, made my cheeks wet from tears. It gave me comfort and sadness to hear your hospital will forever remember our children. This was your place when you were not home. This was your second home. It felt right to remember you right there.

I especially connected with this poem read during the service:

To Honor You

To honor you, I get up every day and take a breath.

And start another day without you in it.

To honor you, I laugh and love with those who knew

your smile and the way your eyes twinkled with

mischief and secret knowledge.

To honor you, I take the time to appreciate everyone

I love. I know now there is no guarantee of days or 

hours spent in their presence.

To honor you, I listen to music you would have liked,

and sing at the top of my lungs, with the windows

rolled down.

To honor you, I take chances, say what I feel, hold 

nothing back, risk making a fool of myself, dance

every dance.

You were my light, my heart, my gift of love, from

the very highest source. So every day, I vow to make 

a difference, share a smile, live, laugh,and love,

Now, I live for us both, so all I do, I do to honor you.

By Connie Kiefer Boyd

After the service, it was time to send balloons to you and all the other children. The fight for life helicopter just arrived as it was time to send off our balloons. It delayed the release a little, but also put in perspective what this hospital is all about. A very sick child just arrived to the hospital needing care. And then off went the green balloons into the sky. I follow your balloon for as long as I could knowing you would find it on the other side.

I am so happy we went to the service. It was a beautiful afternoon honoring you and so many other children at a place that gave you so many years of life. The hugs were heartfelt, and so special. It means so very much to me that we all can still be a part of Children's. Sweet Jacob, you don't need this hospital any longer, but we do. We very much do.

After the memorial service, it was time to meet Sarah at Macy's. She and her friend were trying on prom dresses for Children's Prom coming up in a few weeks. Jacob, your sister is working through her own feelings about you and this hospital by the work she is doing on the Youth Advisory Council and soon entering another summer volunteering at the hospital. She could decide to never put a foot in the hospital again, but she keeps coming back. It was fun to watch the girls try on endless dresses, and both leaving with a big smile as they found their first prom dress. Your sister is beautiful.

I so needed a day remembering you. It was filled with people and places I love. And right in the center, there was you.

Sweet Jacob, I love you to the moon and back. I do miss you dearly.

Mom.

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.