ON THIS FATHER'S DAY

My Jacob,

How can it be that we have lived 364 days without you on this Father’s Day? Father’s Day will always be the day we lost you, no matter what the date is. We lost you on the day that celebrates your very special Dad. My eyes have filled with tears multiple times this week even just thinking about Father’s Day. This is the day when dads go fishing and families meet up for BBQs, but we lost you on Father’s Day. How cruel is that? Your dad had to return the Gift of you on Father’s Day. It’s painful to live every day without you, but I am right now reliving every hour of your last days of life.

This time last year, I knew there was no way back. I knew I would lose you. The breathing tube in the ICU kept you alive. I had my last night with you. I can still remember me tracing every line in your face, squeezing your hand, holding your foot in my palm, and trying to print every little detail about you in my brain. To keep you alive, to always remember every little detail about you.

On Father’s Day last day, there were no gifts or BBQ. There was a hospital room filled of enormous love and sadness. The pain and sadness that comes by losing someone you love more than life itself. When you cry until there are no more tears to cry. When your grief takes over all your physical and mental strength. When your body is aching for sleep, but there is no rest to be found. When the people who love you the most are clinging to each other to breathe, to eat, and to sleep. I can to this day remember your empty wheelchair screaming at us as we were walking out of Children’s Hospital without you. The emptiness, the uncertainty and the raw pain. That was Father's Day last year.

Sarah and I will celebrate your Dad tomorrow because we know he will always be your Dad. On Father’s Day last year, I thanked him for being the best dad for you, Jacob, and that I could never have done the last ten years without him. There was something in that exchange last year that was stronger than wedding wows. There was a commitment that we would enter the future without you together as we had done everything for you together for the last ten years.

Jacob, please send your dad a few signs tomorrow. We will all need them.

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

mom.

FINDING HAPPINESS

Dear Jacob,

This time last year was rough for all of us. You were fighting the hardest you could, but you simply could not catch a break. The battle inside me when I started to see the signs of losing you, and still hoping it wouldn’t be so. I tried to keep up with normal life to not lose my sanity completely. At the same time realizing I couldn’t keep up. I was surprised Sarah was out of school. I had no idea how it happened. I remember my friend Heather calling and reminding me that we were supposed to present at the national mitochondrial conference in less than a week, and I had no idea how I had forgotten about it. Time was rushing, and time was standing still. A battle inside my soul that I don’t wish on any parent.

A year later, and we ended up on a vacation we could never have done with you. We’re on the beach. It’s far away from hospitals, end-of-life discussions, and fear for what will happen next. But don’t let the sunsets, drinks, and ocean ever fool you. You are always in my heart, Jacob. In fact, Jacob, you always seem to find me on the beach. The one place I so wanted to take you, but never succeeded. I had a moment with you the night before we left on vacation. I told you that I was going to make the most of life, and I was hoping you would find us in the Mexican sun. Certain nights your closet star lights catch your left eye in the big canvas of you. This happened that night, and it was as if you were telling me: “mommy, go!”.

So many times, I heard of family and friends vacationing, and I always smiled. I smiled because I knew I couldn’t do that right now, and in the middle of suctioning and diaper changes, I knew there would be a time of traveling again – just not right now. And I smiled because of that secret. I knew the time wasn’t right now, but it would be a time again, and it would not come easy. I think that is why I always leave with mixed feelings. We can do this now, and we know why. It leaves me with a little guilt still.

The one thing I have been trying for is to find happiness in the middle of grief. You taught me this for ten years. In the middle of medical crisis and caring for a very sick you, we always seemed to find our happiness. The happiness for life. It’s not always as easy to find now, but I will keep looking because of you. I owe it to you, my love. I will continue living for both of us.

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

Mom.

THE POWER OF YOU

I found myself on your bench tonight. My feet started walking and took a left turn instead of my usual right turn walking the dog. The sun was slowly setting over the mountains. It was a chill in the air, and I was surrounded by green and blooming trees. I needed to get close to you to get perspective on life. To get back to what truly matters, and not wrapped up in the little details of life that we so easily get wrapped up in. Life is spinning, and there are a million things going on, and I just wanted you.

We're entering the time when you started to be so very sick last year. May 21st marked the beginning of the end. I will never forget the evening you stopped breathing in your sleep. I knew it was serious. I was terrified. For ten years, I had been so very afraid to lose you. So scared of losing you, I would do anything to keep you. When people was wondering how we did it, they didn't realize that the fear of losing you is a power stronger than life. It kept me going 24 hours a day because the thought of having to live even a second without you was unbearable. It was a big black hole with nothing in it. To keep you alive was a force so strong within me, tied to my bones, tied to my heart. You can call it love, you can call it survival, you can call it the force we were together.

I am amazed I am still standing. I am amazed I have been able to find joy, laughter, love and strength in the middle of missing and loving you so very much. Maybe you gave me some of that strength you were so very known for? You sure showed me what it means to love life, and do the best of it, no matter what your circumstances are. I should not have been surprised when the doctors told us that you had no organs to donate, not even your eye lids, since you used up every little bit of your body. You gave life everything you had. When people gave you three years, you decided to show the world you could live against all odds.

How I miss your power. How I miss your strength. How I miss your beautiful face. I remember last Memorial Day Weekend, and thinking the end was nearing. I remember sitting with a good friend on the hospital couch late on Saturday evening telling her this might be it. I wasn't sure we would be able to take you home again. I didn't want to speak the words out loud, but I sure knew you. I sure knew what was at stake.

Us in the PICU a year ago. Anyone who got to squeeze those cheeks were lucky!

And having lost the most precious thing in life, it gives you perspective. A unique perspective on life that comes with a high price tag. The perspective of loss. Anyone who has suffered loss knows sweating the small stuff is just not worth it, that kindness always wins, and to stay true to yourself. That Jacob, I promise to keep close to my heart, as I put one foot in front of the next, walking forward, making the time and distance between holding you in my arms and today, a little further apart for every moment, every day without you here on earth.

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

Always in my heart,

mom.

REFLECTIONS ON THIS MOTHERS DAY

First Mother’s Day without you, and you never left my mind for a second all day long. As I woke up, I thought about you. Your dad and sister were still sleeping, so I got my first cup of coffee and settled in your room. As I looked down on your glass table, I realized some of your Mothers gifts were spread out in the table drawer. I hadn’t taken a closer look lately, and it was a nice surprise to cherish your messages and cards you worked so hard to prepare each year. I went around looking at your pictures and also rearranged your book shelf a little. It was bittersweet as this day truly made me realize how much I have lost. I have lost you, my boy.

Leading up to Mother’s Day, I had told myself to not have high expectations of this day. To simply see where the day would take me, and stay off social media as much as possible. Your dad and sister of course went all the way out to make my day special. You know them. They took me to my favorite brunch place downtown, Sarah even agreed to take some pictures with me (you know how rare that is J), and we walked around downtown. It was a beautiful sunny Sunday, probably the nicest Mother’s Day weather we have had in a long time. They then sent me off to the spa for some relaxation and alone time. It was the Mother’s Day I never had, since I always wanted to stay close to you, to home. Today, it was the right thing to do. Mix it up from what I have done in the last ten years with you.

On my way home, I went to your school. I sat down on your bench right under that big tree. Someone had put a medal on your plaque. I was wondering if it was from the fun run this spring? It reminded me how I took you in your large stroller last year around and around your school so you could finish your run with your friends. I especially remember using all my strength to get you up the hill at the same time as I was trying to keep the stroller as still as I could due to your broken leg! I am glad I didn’t know last year it would be your last fun run, and instead your memorial bench would be next to the trail this year. Your school teacher sent me a note about you as I was sitting on the bench. I also felt your soul in that big tree shadowing your bench today. Thanks for visiting with me.

I ended the day with the people who love you the most, your dad and sister. They made a very special dinner, and look what Sarah made me? I cried, but it was happy tears.

Mother’s Day will never be the same without you in it, but I have a beautiful daughter who needs me, challenges me, and makes life so worth living. I will continue to cherish your memory, your wisdom for life, and the strength you have given me.

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

mom.

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.