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.

MOM

I have visited more with you lately. I have shown you the beauty of the colors of sunrises, sunsets, and the shifting colors of the sky and the ever changing shapes of the clouds. I make sure you look up at the sky to watch the stars before it's time to go to bed. I am here. Right here.

I loved the birthday celebration you all made for me. I know you felt bad you didn't put on a celebration, but look what my school did? It was simply perfect. It was just what I wanted. My principal, my teachers, my paras, and my friends all came together. I love my bench. It is the same blue as the Coyote Ridge school blue. You know I told Mrs. Pries exactly where I wanted the bench to be, right under that big tree. She followed my lead. I had asked her to make sure my favorite song "Happy" was played over and over again. I was so happy all the children of the school got to be part of my party. Did you see that all my classmates from last year had a blue balloon? They knew me the best. The principal said the right things. Mom, thanks for speaking as well. I could hear your voice crack. I know it wasn't easy, but as always, you came through for me. Two of my favorite teachers always looked out for me, so of course they had to send off the balloons to me. So fitting! I can still hear the kids shouting "Happy Birthday Jacob!"

Did you see that I wasn't ready to let the balloons from dad and you come to me just yet? I had to have them sit in the tree for a little longer. When the kids went back to class, I decided to have them travel up in the sky.

Mom, I know I turned your world upside down the day I was born. I know you were worried sick about me so many times. I know how much you continue to love me. I know how we fueled each other's strengths. I know how you found an inner strength, an inner purpose, to always fight for me. You always did what was best for me. I know I made you so happy. I love that you were never afraid to share me with the world, and I shared my beautiful world with you. I know you miss that so very much. I know you miss me. I know it hurts you so much. I know you're grateful for every day we had together, and I know you wanted more. I can't boss you around on my talker anymore, but I will continue to live in your heart as long as you will have me. I'll stay there forever.

Mom, my birthday was hard for Sarah. Thanks for giving her the space she needed. We always had our special bond, and we will always have that. I will always be here when she is ready. Give her space. Trust her feelings. And know that I will always keep an extra close eye out for her. She was after all my favorite person in the whole wide world. The one and only sis. The one who played with me, who bugged me, who showered me in love, and who totally got me. We never fought. We just got each other. Just remember that special gift of sibling love that filled your heart so many times, and got you to forget about all trivial things in this world. I will never ever leave her side. She will know how to find me.

Mom, dad did ok too. He doesn't like big crowds, but he did ok. He was happy to be at my school. He didn't get to see my school life as much as you did. He got to hear the stories, but I think he was pretty impressed with how many friends I made. He thought it was a pretty perfect way to celebrate his own son. Your dad and I have our silent conversations. He doesn't always see the signs I send him, but I always have a special place in his heart. He's my dad after all.

You know I told you in full force during your gym class on Saturday that it was my turn to write you back. I am happy you decided to let me take over for a change. You knew it was my turn.

Mom, I love you to the moon and back.

Love, Jacob.

YOUR BIRTHDAY MONTH

Sweet Jacob,

I wrote about the beginning of the end last time. I was a little scared to open my heart completely, but it was the right thing to do. I want to thank our circle of friends for reading, showing compassion and empathy, and being with us on this journey. Thank you, dear readers and friends.

January. January was your month. It was your birthday month. January got another meaning after you were born. Celebrating your birthday was never "just another birthday"or "another birthday party in the books". Your birthday was a celebration of life. Your birthday was a celebration of you making it through another 365 days. It was a celebration of you. It was my absolute favorite day of the year. I loved it better than any other day of the year. With all your illnesses and hospital stays, I am amazed you always were home on your birthday. You always had a good day on the 31st of January. It was your very special day. Your 10th birthday celebration last year was the absolute best! You sure knew how to make your last birthday the absolute best. What an incredible memory for us to have.

To have you birthday come right after Christmas is like slow torture. We just made it through the holidays, and then it's your birthday month. I struggled with what to do for your birthday. A lot. I had all these elaborate ideas in my head of big parties, big celebrations of you, but somehow it didn't feel just right. I couldn't get my act together. If anything it made me feel exhausted. I couldn't figure out what to do to honor your life and your birthday.

One snowy Saturday when I was walking Max with your dad after watching the movie Collateral Beauty, it came to me. Sarah, Joakim, and I needed to be together. We who always surrounded you needed to be together. That's all there is to it. I was trying to put on a celebration for everyone else who loved and cared for you, and Jacob as much as I want to, it's not in the cards this birthday. I need to keep this simple. I need to keep this close to my heart with the two people who loved you more than anything else. I need time to reflect. I need time to simply be. I need to find you.

Tomorrow morning, we're escaping town. We're going somewhere none of us have been before. We're going to just be. I hope to find some quiet time to reflect on you, and all the beautiful years we got to celebrate you this weekend. Your birthday parties were simply the best. It was so much love in our house.

Yesterday we received a wonderful surprise. Miracles for Mito and everyone who donated to Miracles for Mito in your honor gave us the best birthday gift there is. We got your memory bench. This has been in works for months, and Broomfield made sure it happened in time for your big day. I found myself on your bench last night in the darkness. I watched the star filled sky from your bench, and I knew you could see me. This morning, I decided to take a few minutes and sit on your bench before heading in to work. I already know I have found my absolute favorite spot in Broomfield. It's the park (Quail Creek Park) you loved to hang out in. When you were little you loved playing on the swings. As you got older, you watched the other kids play. We have so many good memories from this park. My favorite one is on Easter Sunday, 2010. We ran into one of your friends from school, and you were so happy to see her. It had been the roughest winter in your life so far, and you finally started to venture out of the house again. From enjoying the sunshine in the park, we went on to have a lovely Easter dinner with friends. I will always keep that Sunday close to my heart.

I already know this is going to be a favorite place to bring a cup of coffee and simply sit and reflect on you and the incredible gift you were to us and so many people.

Find me this weekend, Jacob. Find me on your birthday. Find me in my heart.

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

mom.

P.S. I welcome you to sit on Jacob's bench. It's located in Quail Creek Park in Broomfield. The exact address is 2201-2219 W 138th Ave, Broomfield, CO 80023. It's the perfect park for little children, and Starbucks is within 5 minutes walk.

THE BEGINNING OF THE END

Sweet Jacob,

I ended up in yin yoga. I love stretching in uncomfortable positions that feels like an eternity. It's the good pain. In the middle of an hour of a free flowing mind, I often find you. You can sneak up in all kinds of forms. Most of the time I welcome our visits together. This past Sunday, I found you in a very difficult situation. It was the beginning of the end.

Jacob, you left this world on June 19th. You would have left the world a month earlier on May 21st, if I weren't able to save your life. It sounds so heroic - saving your child's life. Reality is that there is absolutely nothing beautiful, sexy or wonderful about CPR.

Jacob, I have kept this story close to my heart. This is the story I haven't yet been able to put words to. I have told your closest circle of friends. We told the doctors caring for you. But I couldn't come to terms with what happened on May 21st. I still haven't. This day got hidden deep into my brain, only to come out in a very deep hip pose, craving for release. Craving for tears. Craving for understanding for the things that should never happen to a mom. A mom should not have to give her child chest compression. But in my world, it happened.

So, let's go back to Saturday May 21st. I was riding a Century Ride. It was early in the season, and I had no idea if I would make it. It was a beautiful day, and I cranked out my 100 miles. Little did I know that would be the easiest part of my day.

I remember sitting down in my chair in the basement after your bed time. I actually think I was blogging. My legs were hurting. I was content from finishing my ride, and happy it was over. Your monitor was up on the counter as it was every night. We could suddenly hear the alarm from your pulse ox. It often went off without no true worry, so we waited a little to see if we would hear a second alarm or not. We heard a second and a third. Sarah was up on the first floor, so we asked her to check on you. We could hear her screaming from your bedroom. We both ran up the two flights of stairs.

Your oxygen level was seriously low. We increased the oxygen. No response. We removed your bi-pap, and put you on nasal cannula, since sometimes you had a hard time coordinating your breathe with the bi-pap machine. No response. You were turning blue. Our tricks didn't work. And that is the moment, I knew I had to act. You had a pulse, but your breathing was far from perfect. I gave you rescue breaths. I gave you chest compression. Believe me it was nothing like the doll mannequin I had practiced on in CPR class. This was beautiful you, and I was desperate to get you to breathe again. Through monitor beeping, I did what I had to do. I'm not sure anymore if Joakim or I called 911. I have a vague memory I talked to the dispatcher, but I am not having a clear line of events. What I do remember is hearing Sarah half crying, half screaming "no, no, no, no, no, no, no, no. no..." I could see her in the corner of my eye on your white coach. She was so scared, but I could not leave your side.

You did decide to come back. It was almost as it had never happened. You looked pretty good. You were tired, but you were after all sleeping. When the ambulance crew marched in, you were laying on your therapy mat as if nothing had ever happened. Vitals perfectly normal. I don't know how we were able to convince the ambulance crew to keep you home that night, but I guess they realized it wasn't much more they could do. You were stable, you had decided you wanted to still fight.

Doing CPR on your own child is an adrenaline high, Jacob. But there is nothing glorious, nothing heroic about it. In fact, sitting down after you had settled for bed again, I was sad. I was so very sad. I knew it wasn't normal to simply stop breathing in your sleep. I knew this was serious. I feared it would happen again. I feared it would happen as soon as overnight. I feared the worst. But since the moment you were born, we were always hooked together, and that also meant me doing anything, anything for you.

As always you wrote your own story, Jacob. You decided May 21st was not your night to leave this earth. You had more to give, you had more fights to fight, you had more love to give. But looking back on May 21st, your dad and I know in our hearts that this day was the beginning of the end. You had your beautiful moments during your last month of life, but it was a struggle. It was a struggle for you to keep up with the demands of your body. Maybe you knew we needed a little more time. Maybe you knew we needed to know that modern medicine couldn't do anything more. Maybe you knew we needed to know the deepest secrets of life and death. Maybe we needed time to prepare.

So, why am I telling the world about our secrets? I do so because I know I am not the only mother who has saved his or her child's life. It's terrifying and places scars on your heart and brain. Would I do it again? In a heart beat. That is how you and I lived together. In our world, nothing was truly hard. It was simple. It was beautiful. It was raw. And so very real. We let the rest of the world sweat the small stuff. What I would do to do it all over again.

My so very cool Jacob!

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

mom.

WHAT I KNOW

Dear Jacob,

Social media has decided 2016 was a crappy year. We lost many musicians and artists we will forever remember, and let's not get started on the election. What I know is that the worst thing that could happen to me, and to all parents for that matter, happened in 2016. I lost you. I remember thinking what I would do without you, since I knew the day would eventually come. I always saw a big black hole. I couldn't even in my wildest dreams envision life without you. My heart and mind didn't want to go there. I wanted to stay in the world you were apart of.

2016 taught me the hard lesson that life goes on no matter what happens. There will always be a sunrise and a sunset.

This is what I know going in to a new year without you:

• I'm still standing. I'm still amazed that I am getting out of bed every morning, and trying to do the best of life. The big black hole didn't catch me.
• No one should have to lose a child. My maternal instinct didn't die with you.  I am still worrying about you, and hoping you are fine. Losing a child is like having your leg amputated. You know your leg is physically gone, but you can still "feel" your leg. That is the best way I can describe losing you.
• I love to live. I have discovered a deep strong desire to live even when my biggest motivation to get up in the morning, you, are not there to greet me each morning. As my heart is aching, I am still loving so many things in life. The glass is still half full, not half empty. I'm grateful for this special gift.
• I love your sister and dad. I think I cherish them even more after having experiencing tremendous loss. They simply get me.
• I think of you all the time. You never leave me. I love when people ask about you, and tell me memories of you. People are afraid they are going to make me sad, maybe not realizing that you never leave my mind. You're always right there, and I love sharing that. It makes me happy to talk about you.
• I can't come to terms with the statement that "you are so much better off where you are now". I understand that you didn't live a life of a normal child. I understand you endured a lot of medical challenges. But gosh was your life worth living. All that love surrounding you made you want to stay on earth as long as your body possibly let you. I am convinced of that.
• I love the signs you send me. I love when you help me find strength when I don't think I have any more. I love you always making sure I know you're never far. 
• Don't think I am not grieving if I don't cry all the time. I need a normal in the not so normal life right now. The ugly cry is not always meant to be shared. Most of the times it's just you and I.
• Friends, keep reaching out to me. I don't always have the same energy as I had before, but I love the messages and I love my Jacob tribe.
• Jacob, you taught me to not sweat the small stuff. I still fall into the trap sometimes, but I am getting better at it. 
• Kindness always wins. Sometimes the smallest act of kindness can change somebody else's day. Never underestimate that power. It has carried me all summer, fall and into winter. Each and every day.

2016 didn't turn out the way I wanted it to, Jacob. I hope you're still a little proud of me still standing. I will tell you that it's with mixed feelings I'm embarking on 2017. I very much loved that you were part of 2016. Now I am entering a new year without you in it. We still have so many "firsts" without you, your birthday being next on the list. It's not always going to be easy.

But what I know more than anything is that I will forever love you to the moon and back,

mom.