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.

 

YOUR STOCKING

Sweet Jacob,

I am happy to let you know I found some peace and joy this Christmas, but a first Christmas without you did exhaust me. The anticipation of a Christmas without you got the best of me. Christmas Eve was good. I felt your presence all day long. I think you knew I couldn't do a first Christmas completely without you. Family and friends, Swedish traditions, too much food and wine made for a pretty awesome Christmas Eve. The most important thing was that we were surrounded by friends who love you like we do.

Sarah was excited about Christmas Day morning with our traditional brunch of Christmas food leftovers and gift opening. Your dad went out of his way to get me several gifts from you. I now have coffee mugs with you on it for every occasion, and my own mitochondria necklace. I am pretty psyched about my gift from you to dad too. He got a ring with your very own fingerprint on it.

I'm slowly learning about life without you, and grief leaves me exhausted. By Christmas Day afternoon, your dad, sister, and I all ended up on the bed resting and half sleeping. Since we had the day all to ourselves, we simply went with it. But man, this is something I need to get used to as we're embarking on our "firsts without you".

As we were keeping old traditions, I also felt we needed to create new traditions this year. I am happy I put out a plate with your picture and candle at our Christmas table. It was the right thing to do, since you were on everyone's mind.

I also put up your stocking after Thanksgiving. I asked family and friends to send you little messages of their favorite memories with you. I put the cards and little messages in your stocking throughout the month of December. Last night, we opened your stocking. It was perfect. I couldn't make it through the notes without crying, and your dad and sister joined me. It was a good cry. It just amazes me how very much you were loved, and how many lives you touched. There were memories I had forgotten about, so it was great to relive them through the words of friends and family. It made it real. All the letters are back in the stocking once again, and they will come out next year again. We will find a time to read them out loud each Christmas, and share in the joy you spread in your short but beautiful life.

I am absolutely amazed with the outpour of love and support for us this past week. The messages, the cards, the letters, the phone calls, the meaningful gifts, and sincere friendships. I know this time of the year is busy for everyone, and I never take for granted that we will be on people's mind. So, it's with tremendous awe and gratitude, we have embraced every gesture of love and kindness. We never feel alone.

We love our very own Jacob tribe.

Sweet Jacob,

I love you to the moon and back,

mom.

YOUR SISTER

Sweet Jacob,

You're on my mind all the time. It's the holidays. They do that to me. This time of year is wrapped into so many traditions, and you were always right there in the middle of our celebrations. We figured out a beautiful way to do Christmas around vest treatments, medications, and anything else you needed. It was our Christmas, and our way of being a family as a whole. It was always pretty perfect.

I knew to never take things for granted with you. Christmas was no different. Last year, two dear friends lost their children on this very day. It hit me hard. It hit close to home. It made me realize how very fragile life is. It made me squeeze you a little harder last year, and truly understand what a miracle you were to us all. I especially remember sitting on the couch in the afternoon on Christmas Day, and just holding you and your sister squeezing in next to us. It was a perfect moment.

I wanted to let you know how your sister is doing. First of all, I couldn't have made it through the last six months without her. She has a way to keep both your dad and I going, moving forward. One of my almost shocking observations after you passed is how Sarah mysteriously had become a high schooler. Our last ten years were really busy, and somehow I didn't realize your sister was growing up right in front of my eyes. The thought that she is going to college in less than four years is a little frightening. I know many teenagers don't want to be with their parents, but I have so far to witness that with your sister. She loves hanging with us, and it is such a gift. As you know, she is fun, sincere, smart, and definitely goofy. It's a good combination.

Your sister misses you. It hurts her. It's hard to hurt, and at the same growing up, trying to fit in, and finding yourself. I keep talking about you all the time, so she knows all her feelings are true and valid and perfectly normal. I try to put words to her feelings when she can't. When she's sad, she confides in her dog Max. His personality definitely reminds us of you. He even has his share of medical issues that has kept us on our toes including a possible diagnosis of pancreatitis. After our last vet visit, I was asked if I were a doctor, and I had to admit that all my medical experience comes from you. Knowing all the ins and outs of pancreatitis, lipase, and stomach pain.

I'm proud of your sister. I'm proud of her staying the course in school, with her friends, with her volleyball, and with her teenage life. Not an easy task, but she's doing it. I'm also happy that she wants Children's to stay in her life. When she has a day off from school, she goes and volunteers in the hospital. Her favorite thing to do is to give out gifts to the newly admitted families. Remember when she gave you that green monkey blanket?

Sarah also joined the Youth Advisory Council at Children's this fall. This Council consists of patients and siblings, and they look out for the children in the hospital. Sarah has made good friends on the Council, and it was fun to watch her at the Holiday Party. She didn't once blink with friends being in wheelchairs, having autism or battling cancer or other diseases. If anything, Sarah fitted right in the group. I was able to snap a few pictures from her participating in the Harley Davidson toy drive with 2500 riders, and her holiday party.

And do you know what she is really excited about? She gets to go to Children's Prom this spring! She is not even old enough for prom, but it doesn't matter. She gets to go! She is beyond excited. I'll share that special night with you.

On Thanksgiving morning, I was so very sad. I missed you beyond words. I was sitting on the couch, and Sarah curled up with me. I told her I could never do this life without her. She is saving me over and over again.

Tonight, we're watching the ultimate Christmas movie Love Actually. Christmas food is filling our fridges, ready to feed eighteen friends who are coming over for dinner tomorrow. I will put out a plate for you, since you will be on everyone's mind. You're never far from us. It's not going to be easy without you. In fact, it's going to be pretty shitty. But I hope in the middle of our hearts hurting for you, we will find some moments of joy and Christmas spirit.

One of my favorite Christmas pictures of us.

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

mom.

YOUR ART WALK

Something amazing happened this week. Your whole school community came together for YOU. They honored you with an art walk throughout your whole school, both floors. Every single child at Coyote Ridge penciled a picture, and then worked with your favorite art teacher Mr. Klein on using pastel colors, not once, twice.

I rushed out of a meeting running late to get to your school in time for your art walk. My brain was wired for work, so as I walked in to your school, my brain was still busy. And then I saw the line of kids and parents who walked through the school to pick out their art work and make a donation in honor of you, sweet Jacob. It was crazy busy. It was overwhelming. It was beautiful. By the time, your dad made it to school, some of the walls were already empty from art being sold. I loved to see your picture, your name, and messages of love in the middle of a whole school's creativity. If anyone loved art it was you. There was no subject you loved more than art. You and Mr. Klein had your own relationship, and he really got you. He really knew how to get your creativity out of you, and he knew how to wait and listen for you to speak your mind. I loved hearing the stories of your art lessons in the car on the way home from school. I have your art all over the house.

Two of your beautiful teachers who love you to pieces put on this art walk. They put on the gallery walk to raise funds for a memory bench for you, sweet Jacob. It's going to be on the backside of the school where I always picked you up. Children and teachers can sit on the bench during recess, and they will remember and hear stories about you for years to come. I just love this idea because there was no happier place for you than Coyote Ridge.

As the kids worked on their art pieces, they got to learn about you. They got to learn that you loved the outdoors, that you loved school, that you loved playing with your friends, and that you loved to paint and craft.

I have to admit. It's hard walking through the doors of your school. It's hard because I am not pushing you in your wheel chair through the front doors and seeing your smiling para Nerma anymore. There is an emptiness walking through the doors without you. You are the reason I know this school. I honestly didn't realize until after you died how incredibly happy you were at Coyote Ridge, and what an incredible school environment you had. You were always completely included in the classroom and you made so many friends. Your teachers and therapists went out of their way to make sure you had everything you needed to be successful. This is the place you got to simply be a kid. No blood work, no vitals, no tests. This is the place where it was all about your abilities, not your disabilities. How incredibly happy I am you had all that in your life.

Your very dear friend CJ who is now in middle school came to your art walk with his mom. It fills my heart every time I get to see CJ. He of course snagged the Minion picture before anyone else could. He picked it because he knew you loved the Minions.

And I ran into your favorite girl Emma from kindergarten. She's so grown up now. Her eyes were glittering as we talked about you two. You always picked the best girls, and you always had an eye on the pretty girls. It was as if you knew you didn't have all the time in the world, so better go for the most beautiful kind hearted girls starting already in preschool. You wasted no time.

It was a perfect Tuesday. Your whole school community came together doing something you loved more than anything, art. You loved people, and that's what I got to witness. So much love for you. Soon, it's going to be a bench so we can all keep your memory in our hearts. I'm planning on taking a walk to your school with a good cup of coffee and simply sit and hold you in my heart.

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

And to this day, I am so incredibly proud of you.

With so much love,

mom.

YOU ARE EVERYWHERE

Dear Jacob,

I survived Thanksgiving. It was hard the days leading up to the holiday. I cried in the car to work, I cried in the car from work.I cried. Holidays are hard because they are filled with memories of you. If someone would ask me what you and I did this evening a year ago, I wouldn't know. If someone would ask me what I did on Thanksgiving a year ago, two years ago, five years ago, I would be able to tell you. I can smell, sense, taste, feel, see you.

Watching Macy's Thanksgiving Parade, 2012.

Cuddling in bed on Thanksgiving morning, 2015.

Friends made Thanksgiving good, actually really good. Friends who truly knew you. Friends who relate to our happy times, and our pain from longing for you. We did something really special to honor you this Thanksgiving. Before dinner, we had a Christmas ornament party in honor of you. We all colored ornaments with acrylic paint, something you did so many times this time of the year. Sarah was not so sure about my craft party, but she did like it in the end. She even made me an ornament with the silver letter J. As I was shaking one of mine, a "J" appeared out of the white paint. I am not kidding. It was right there. My friend Karen made an extra special ornament for me saying "I love you, Jacob 2015". Your forever Thanksgiving parting gift to us all. As we gave thanks this year, we remembered your beautiful words, and we all cheered to you. It turned into a good day with friends, laughter, and making good memories.

The day after Thanksgiving, I felt as if I had a grief hangover. I don't know any better way to describing it. I had gathered all my strength for Thanksgiving. My tank was empty. It was a good day to stay in workout clothes and start decorating the house for Christmas. I thought it would be so hard, but I enjoyed taking my time reflecting as I was transforming our home for the holidays. I especially enjoyed decorating your little Christmas tree, listening to one of your Christmas CDs, and just thinking back on our happy times together.

Over the Thanksgiving weekend, I got so many messages from your friends remembering you as they were putting up their Christmas decorations. I had forgotten how many people you crafted for. They were taking pictures of your gifts and sending me little messages of love. I have the same feeling in my house as it is all lit up for the holidays. You are everywhere.

And then there is your stocking. Your Snoopy stocking is hanging right next to your dad's Grinch stocking as it always did. I would love to fill your stocking with love this year. If you're reading this, and have a good memory of Jacob or a few words you want to share with our boy, please write them down. Send them to us via mail (13960 Lake Isle Lane, Broomfield, CO, 80023) or email (mhopfgarten@gmail.com). I will make sure all messages will make it into Jacob's stocking, and as we find our way through the first Christmas without our boy, we will read and cherish those beautiful words and memories.

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

mom.

I'M GRATEFUL FOR YOU

Dear Jacob,

I'm grateful for you. I'm grateful for the beautiful ten and a half years we had together on earth. I'm grateful you were in my life, and I'm so grateful for the time we had together. I'm grateful for you teaching me what life truly is about, for teaching me about unconditional love, to never give up, and to enjoy every moment. You made me so very happy.

Gratefulness didn't come easy. Since you passed away, I have not felt grateful. Thankfulness has been clouded by grief. I have felt great sadness.I have felt anger. I have felt emptiness. I have felt loneliness. I have felt anxiety, but I didn't feel grateful. Yesterday, it came to me. In light of Thanksgiving, there is nothing I am more grateful for than being your mom for ten amazing happy life changing years. You helped me grow up, see what is truly important in life, and always advocate for the ones who can't. You gave me a purpose every day. I know I won't always feel this way, but tonight I find grace and thanks as I very much miss you.

I got a message this morning that you are doing really well and that you're happy. Somebody who took care of you has a strong sixth sense. You visited with her in her dreams. You played with her daughter, you were learning to speak, you sat up, and you were munching on a treat. You were looking really well. You sent a message about happiness, about feeling well. I cried reading the lines, but it also gave me great comfort. I think you knew I needed a sign, a message from you in light of this family holiday upon us.

Jacob, I will never forget our last Thanksgiving together. It was completely perfect. You were strong, you were healthy, you had a really good day. We were surrounded by friends we call family. We all gave thanks including you. You worked so hard on finding exactly what you wanted to tell us, and you found the perfect words: "I love you" with your talker. It was a magic moment. Everyone choked up a little. You showed us the way, and tonight I think it was one of your many parting gifts.

Thanksgiving 2015

Keep sending me your signs as well as a little of your super power strength. I will need it this holiday.

I'm grateful for you. I'm grateful for your dad and your sister. I am grateful for friends & family.

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

mom.