tag:blogger.com,1999:blog-77791961209032619782024-03-12T22:07:35.177-06:00Moments with JacobMariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.comBlogger665125tag:blogger.com,1999:blog-7779196120903261978.post-26614689769414780482021-11-07T18:26:00.004-07:002021-11-07T18:28:32.583-07:00<p>Come along on Letters to Jacob's book tour!</p><p>Letters to Jacob is going to be featured on different book sites throughout the month of November:</p><p><strong style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"><span style="font-size: large;">Tour Schedule:</span></strong></p><p><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 8 – </span><a href="http://workingmommyjournal.ca/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Working Mommy Journal</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 8 - </span><a href="http://www.rockinbookreviews.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Rockin' Book Reviews</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 9 – </span><a href="http://splashesofjoy.wordpress.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Splashes of Joy</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 10 – </span><a href="http://www.amybooksy.blogspot.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Locks, Hooks and Books</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 12 – </span><a href="https://www.lamonreviews.wordpress.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Lamon Reviews</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 15 –</span><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"><a href="http://golddustediting.com/" style="color: #24678d; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Gold Dust Editing & Book Reviews</a> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 16 – </span><a href="https://www.amamascorneroftheworld.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">A Mama's Corner of the World</a><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 17 - </span><a href="https://www.superkambrook.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Kam's Place</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 18 - </span><a href="https://coverloverbookreview.blogspot.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Cover Lover Book Review</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 19 – </span><a href="https://lisasreading.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Lisa's Reading</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 23 – </span><a href="https://www.instagram.com/twilight_reader/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">@twilight_reader</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 24 – </span><a href="http://litflits.blogspot.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Literary Flits</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 26 – </span><a href="https://booksforbookz.blogspot.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Books for Books</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span><br style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;" /><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;">Nov 29 - </span><a href="https://www.jazzybookreviews.com/" style="background-color: white; color: #24678d; font-family: Roboto; font-size: 16px; text-align: justify; text-decoration-line: none; transition: all 0.2s ease-in-out 0s;" target="_blank">Jazzy Book Reviews</a><span style="background-color: white; color: #515151; font-family: Roboto; font-size: 16px; text-align: justify;"> </span></p><p>Come along for the fun! There will be book spotlights, guest posts, and giveaways!</p><p>Thanks for coming along on Jacob's journey, and sharing in my raw, personal story of love and loss.</p><p>Love,</p><p>Maria.</p>Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-23985172829330222452021-06-07T14:52:00.001-06:002021-06-07T14:53:44.292-06:00Letters to Jacob: the book trailer<p> Letters to Jacob is coming Summer 2021! Here's a sneak peek:</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="402" src="https://www.youtube.com/embed/n3UZa7N1U8I" width="483" youtube-src-id="n3UZa7N1U8I"></iframe></div><br /><p>Learn more about the book here: <a href="https://momentswithjacob.blogspot.com/p/letters-for-jacob.html">https://momentswithjacob.blogspot.com/p/letters-for-jacob.html</a></p>Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-18659780219081890212020-10-25T15:24:00.004-06:002020-10-25T15:25:04.187-06:00GRIEVING WITH GRACE<p><span style="font-family: "Coming Soon"; font-size: 14.85px;">Dear Jacob,</span></p><div class="post-body entry-content" id="post-body-1398201781373533648" itemprop="description articleBody" style="font-size: 14.85px; line-height: 1.4; position: relative; width: 768px;"><p>I was standing in front of my closet, and picked out my simple black funeral dress. This dress wasn't bought for funerals, but this is what it has become. A black simple dress covering my knees. It has gotten a bit worn over the years, but it's the dress that has come to endless funerals of children who had to say goodbye to loved ones too early. </p><p>As I sat in the car, the tears came flowing down my cheeks. I saw your smiling face in front of me, and thought about the day I had to be stronger than life itself. I had to be at your funeral. I explained to hundreds of friends and family that it was never hard to be your mom. The hard part was to let you go, to rebuild a life remembering and honoring you each day. To grieve you with grace for the rest of my life.</p><p>As I was driving, I was thinking of the beautiful girl we were going to remember forever. Her end of life story was similar to yours. She suddenly got sick, and came home on hospice. Her body was tired, and she slept a lot. Her body needed the hospital one more time, and that is where she peacefully passed away two days later. As I got the mom's text that she was sleeping a lot or that she had to go back in to the hospital, I bit my tongue and wrote some encouraging words rather than saying it sounded like our story. I wanted to keep hope for the mom, and knowing the girl was in charge. </p><p>I didn't know how a funeral would be conducted in times of Covid-19. It was a smaller service, everyone social distanced, wore a mask and no reception afterwards. Goodbyes were said outside. It was a beautiful service. The church was filled with pink roses and flowers and a large Christmas tree decorated with pink ribbons and white glass ornaments was the centerpiece. Little bells with pink ribbons were handed out to us. We sang her favorite songs including Jingle Bells. This girl had planned her own funeral down to the smallest detail. It was beautiful, it was her day. As tears were silently falling, stories of a strong girl who lived her life to its fullest, who always wore pink, and who always got the last word in every conversation. A girl who asked her loved ones to not forget her. </p><p>As I drove home, my mind went to the parents. Both faced with the unthinkable task to rebuild their lives without their girl. I literally felt that I had to start walking again when I lost you, Jacob. Life was a blank page where I had to start writing my story once again. It was not a page I wanted to fill, I simply wanted my old familiar life back. </p><p>As I was reflecting on how you go on living, and how as a grieving parent you don't totally fit into this world any longer. We struggle with small talk, since we crave sincere, honest conversations. We have no problem to discuss death and grief over coffee and wine and in fact do better when we can have those deep conversations. We don't always know what to say to a parent being upset about their child having a cold or struggling with homework. What I would do for another sleepless night next to you as you were struggling with a nasty infection or sitting in another IEP meeting. I would do anything to once again tell the teachers that I didn't care about any of your goals, I just simply wanted happiness for you. </p><p>Four years into the grieving journey with no end date, and I realize that grief and loss leave their traces. I am still a natural fire fighter. I love the adrenaline from fighting a good fight. Sometimes I go into fire fighting mode when the situation doesn't require it. Please dear world, know that this is engrained in my body after having fought life and death for ten years. I care deeply about what is right or wrong, and sometimes struggle when people don't care as much as I do. I might unintentionally judge when people compromise their beliefs because maybe in the moment it's the easiest to do so. How incredibly lucky I am to have family and friends who get it, and who get me.</p><p>And as the service came to an end, I was standing in the parking lot of the church holding another grieving mom's hands. We talked about the day we buried our children as we were shivering in the cold fall air. Many times a sentence didn't have to be completed, we both knew. As our newly grieving mom reached us, no words were needed. The moment only needed tight holding hands full of grief and grace.</p><p>Jacob,</p><p>Thanks for everything you taught me. I love you to the moon and back.</p><p>With love,</p><p>mom.</p><p><br style="background-color: white; color: #333333; font-family: "Coming Soon";" /></p></div>Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-78252798534070658052020-03-22T21:59:00.001-06:002020-03-22T22:03:15.477-06:00WORRYING DOES NOT EMPTY TOMORROW OF ITS TROUBLES<br />
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I love this quote, and I feel it's very fitting in our world today.<br />
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Jacob was so very sick. I had just came home from body pump and found Jacob seizing and slightly blue to his skin due to him not being able to hold his oxygen despite Joakim cranking up the oxygen concentrator to 10 liters. In minutes, we were in an ambulance. Sepsis was confirmed in the ER, which led to a whole protocol of tests and rescue medications to save our son's life. Later that afternoon, we found out Jacob had intestinal translocation. Dr. E. decided to deliver the news herself together with Jacob's GI doctor. We knew that meant it was serious. She asked me to have Joakim come to the hospital. She wanted us both by Jacob's side. Due to Jacob suffering from adrenaline insufficiency, he couldn't fight this without high doses of IV steroids. It was one of many times in the ICU when I didn't know the future of Jacob's life. I was sick to my stomach of worrying, and not knowing what the next hour would bring.<br />
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It was spring break. Sarah's cousins had saved up their money to come and visit us all the way from Sweden to go skiing with us in Breckenridge. We had organized for nursing around the clock to spend two days together up in the mountains with Sarah and her cousins. The rest of the week, Joakim and I would tag team between Denver and Breckenridge.<br />
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All of that was thrown out the window when Jacob came down with intestinal translocation. I still went running around Children's that Saturday morning. I stretched at my regular spot and looked at the sky as I was feeling my tired calves, and knowing that all our plans were out the window including the future of Jacob's life. I remember looking into the clear blue Colorado sky thinking "this will also pass". There will be another vacation with the cousins, there will be another spring break for Sarah, there will be another time. The only thing that truly mattered in that moment was that Jacob would be ok again.<br />
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As we're all social distancing and self quarantining, I feel a sense of familiarity. I have put my whole life on hold so many times. I worried about Jacob's life for ten years. I learned to live in uncertainty, and being the best fire fighter you can imagine. I learned how to find laugh and humor in the hardest of situations. I always had someone giving me a big hug, a warm smile or simply holding my son's hand. I went to bed so many times not knowing what the next day would bring, but I always greeted the sun rise no matter what the circumstances were.<br />
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As we're now facing COVID-19, we all have emotions and worries. We are all impacted in one way or another. We have all seen pictures and videos from China or Italy or even know someone who can tell her or his own story in great detail. What we fear is to die or have someone we love die. I know this fear. I lived with it for ten years. Sometimes my head would spin from worrying. I knew it wouldn't change anything, but logic and common sense didn't always reach my mind. I always came back to this quote<b> "Worrying doesn't empty tomorrow of its troubles, it empties today of its strength." </b><br />
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This journey is personal to each of us, but don't lose your strength. If we look closely, we have so much. Know what you need to keep sane. I run again as I always did to clear my head, I walk the dog to breathe fresh air and find my boy in the sky, and I am silly with my girl and husband to get them to laugh. I check in with friends and family, and sending all my positive energy and thoughts to our most vulnerable and healthcare workers to keep fighting the good fight.<br />
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In the middle of COVID-19, I have hope for humanity. Good health is never guaranteed. COVID-19 doesn't care who you are or what you have done. We can only work together, and we will need everyone's strength and humanity. I have hopes the world will change.<br />
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Love,<br />
Maria.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com1tag:blogger.com,1999:blog-7779196120903261978.post-62403621671515744052019-12-20T22:28:00.001-07:002019-12-20T22:40:34.130-07:00SPREADING SOME HOLIDAY JOYSweet Jacob,<br />
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Today was a good day. It was a sweet reminder of what truly matters as well as spreading some holiday joy. Sarah and I volunteered at Snow Pile at Children's Hospital. All patients received an overflow of Christmas gifts today. Parents got their own personal shopper, who helped to pick out presents for all their children. An enormous conference room is converted to a glorious toy store filled with gifts for all ages.<br />
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Do you remember when we participated in Snow Pile? I believe it was in 2008. This was the first Christmas you were hospitalized. You had a bad case of pneumonia. We were so hopeful you would come home in time for the holidays, but it was not in your cards that year. I remember a volunteer entering our room to take me to Snow Pile. I remember being surprised to be assigned a personal shopper and entering the large conference room filled with toys. I was behind on my Christmas shopping, so the timing was perfect. I knew Sarah would especially enjoy the extra gifts under the Christmas tree. It spread some light in a stressful day of fever, tired lungs and antibiotics.<br />
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Today, Sarah and I were the volunteers entering patients' rooms. We were responsible for the PICU. We know that unit in and out, and the familiar click of the heavy door as I was entering the floor. I know the cleanliness of the floor and the endless rows of monitors in each room. I know the feeling of sleep deprivation bundled with stress and anxiety. I know how hard it is to leave your child, even for a brief moment to go shopping. I know the only thing you want for Christmas is to have your child home again.<br />
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As I escorted the parents down to Snow Pile, I got a glimpse in to the lives of the moms and dads. The hope of being home in time for Christmas despite it being less than a week away. Parents suddenly realizing that life is going on outside of the doors of the PICU. Their smiles as they realized they would get a little break and a little help this year. I was so happy I could relate to their stories. I touched a shoulder of a mom who had not slept all night and suggested her to take a nap this afternoon. I encouraged a dad to ask his physician to explain what the plan for his daugher is. I told a mom about the holiday meal served in the hospital on Christmas Day. It was tidbits from our lives, and little moments of understanding between two parents knowing what is going on inside the hospital walls.<br />
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I got a big hug from your physician during your last and final hospital stay. She was so happy to see both Sarah and I. She asked if I was ok. I thought about it before I answered, and I could tell her that I am ok. In fact, it felt great being back in our familiar place and give back. I also got to hug and chat with some of your favorite nurses throughout the day. I did have to take an extra big breathe as I passed the room where you died, but I was doing ok. I am in a place I still call home.<br />
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I am so incredibly proud of your sister. She has found her own place at Children's. She knows her people all over the hospital, and she is very good with parents and patients, even when she is surrounded by the sickest children of the hospital. I always knew you were going to give her the gift of compassion. I see it, Jacob.<br />
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It was a day of spreading joy and the holiday spirit in a place you introduced to us. It was even better sharing the day with dear friends.<br />
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Sweet Jacob, I think of you so much this time of the year. As I put on my favorite leggings this morning, I realized that the pants would be perfect to snuggle up with you in a hospital bed. The simplest of things are what I miss the most. How grateful I am tonight that I got to simply be part of the holiday spirit right in the heart of the hospital.<br />
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Jacob,<br />
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I love you to the moon and back,<br />
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mom.<br />
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This is why I love this place.</div>
Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-88559906537500947892019-11-28T09:25:00.000-07:002019-11-28T09:25:08.932-07:00WE ALL GET TO TELL OUR STORYIt's Thanksgiving week, and snow is surrounding me. This afternoon as the sun was settling the sky was purplish pink against the white silver snow. I felt muscles in my body I didn't know I had from shoveling with my girl today. Our dog was so happy to see the snow he didn't know what to do with himself. We made our first Swedish glögg (gluehwein) of the year after finding a bottle hidden in the kitchen cabinet.<br />
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This morning I joined our weekly Mito support call hosted by Miracles for Mito. It's led by our seasoned nurse Marybeth Hollinger specialized in mitochondrial disease. Since my girl was in the kitchen playing rap music on her phone and our dog was running around, I put the call on mute as I was baking and cleaning and listening to this wise community of patients across the country.<br />
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The topic of today's call was Thanksgiving. Holidays are not always an easy task when you're managing a chronic disease like mitochondrial disease. Stories unfolded. The typical Thanksgiving meal is full of carbs and not always the easiest food to digest. This means for some of our adult patients they need to skip the meal completely. One woman expressed her thankfulness to simply smell the feast and holding the grandbabies as the family is enjoying their special meal. Some are going to stay in bed today resting their mitochondria for the anticipated stress a holiday has on a mitochondrial body.<i> Every single one knowing family and friends is what truly matters</i>, not what is served at your table or if you eat stuffing and pie.<br />
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I love Thanksgiving. It's my favorite American holiday. It's a holiday of friends, family and giving thanks. We celebrate with friends we call family. It's casual, the best meal of the year, long conversations and friendships. What I love the most about the holiday is that everyone independently of age can give thanks. Last year, I had a big lump in my chest. Jacob was sitting in my chest. Despite all gratitude, I didn't even dare to mention his name not knowing what emotions would evolve. After hearing all stories unfold this morning on the Mito support call, I realized we all get to tell our story. Maybe not every part of your life is perfect, but we all have a magnitude to be grateful for.<br />
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Today, I will tell my story. No story is perfect, but it's my story. My holiday is shaded by the empty chair of Jacob, but I have a tight knit family right next to me. They get me, and I get them. I have friends who are standing by us no matter what. I get to enjoy the craziness of the day before Thanksgiving, bake pies and side dishes and hearing girls giggling in my kitchen. I get to savor all the flavors of Thanksgiving and laugh with friends. I get to live. I get to be thankful. I get to tell my story.<br />
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With gratitude,<br />
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Maria.Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-54913297399175645482019-11-22T18:08:00.000-07:002019-11-22T18:08:14.112-07:00IT'S HAPPENINGSweet Jacob,<br />
<br />
It's happening. I am tackling my bucket list. I am turning your blog into a book. It is something I wanted to do in my life time, and I am doing it. I am focusing on the year after we lost you. The year when I realized that grief and love are the same thing. They are inseparable and will always be. Grief would not be hard, if it weren't for the fact that my body aches for you. My arms feek empty without you in them. My lips want to kiss your nose one more time. I miss our life together, and even more I miss my purpose to be your mom.<br />
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I am still searching for that larger purpose in life you gave me. I will write about it, and take your readers on a journey on how it is to get through life by missing a body part. That is how it feels to not wake up with you any longer. Life was simpler in many ways. As I am reading what I wrote, I sometimes catch myself with tears in my eyes. It brings back raw feelings.<br />
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I was nervous to get back the first round of edits from your editor. I felt as if I were back in school being graded. It is just a touch more personal this time. It is our story, our life together.<br />
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I believe it will take me into the spring to fully have this project completed, but it is happening.<br />
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Stay tuned.<br />
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Jacob,<br />
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I love you to the moon and back,<br />
<br />
mom.Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com1tag:blogger.com,1999:blog-7779196120903261978.post-40783776053273222132019-10-14T20:42:00.001-06:002019-10-14T20:42:08.009-06:00CELEBRATING OUR WORK Dear Jacob,<br />
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We celebrated the mitochondrial community this weekend. We had a full house at the Field House.<br />
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It was a travel back in time to the 80s with leg warmers, neon colors, and oversized sweaters. Decorations were rad, music was fun, and our friends went all the way out for our community. We could not have asked for more.<br />
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We also happen to have the best Mitochondrial physician we could ask for. The best one. He speaks to the hearts of a whole room. He makes mitochondrial disease manageable. He cares about his patients. He partners with us. He knows what he can do for his patients, and where Miracles for Mito can step in. A mom squeezed my arm and said: " I want him to be my son's doctor". I could only agree, even if I can not wish this disease on anyone.<br />
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Our event brought me back to the 80s. Little did I think about having a family or having a child with mitochondrial disease one day as I lived through my teenage years. Mitochondrial disease changed who I am today. You taught me things about life who can only be lived. You learned me how to be a fire fighter and how to deal with uncertainty and fear. You taught me the incredible lesson on how to go on living despite the incredible loss of you. How to go on living and even find beauty in this world when the most beautiful thing has been ripped out of your heart. They are survival skills. It doesn't mean I won't fall again. It doesn't mean I won't hurt again, but I know how to land on my feet.<br />
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I could have walked away from mitochondrial disease and this community three years ago. I could have, but it was <i>never </i>an option. Having lived in the community for ten years and created Miracles for Mito meant that there was no way back. There was only one way forward. I am not going to lie. It is not always easy. I wanted you to be at our first Holiday party. I wanted you to sit next to Santa. I wanted to celebrate another Christmas with you. The thing is that no matter how deep I grieve, it can not take away the smile through tears from another Mito mom. On Saturday, one of our Mito children turned 16. Her family chose to celebrate her sweet sixteen birthday at our silent auction. Not everyone has a full room of people singing happy birthday. Not everyone get to dance to Footlose with your mom's arms wrapped around you. That makes me happy.<i> It makes me happy because you taught me the incredible gift of enjoying each moment and understanding when those moments happen in life. </i><br />
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It's a horrible disease that hit you, our family, and the families we support. In the middle of the cruelty of this disease, we have created something beautiful. Something that is here to stay, something that is incredibly meaningful, something that will never forget you, Jacob. This is the work of Miracles for Mito. This weekend, I felt the fruits of our hard work. We are making a difference, and I am keeping my promise to you. We will keep fighting the good fight. We will continue to do more.<br />
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Jacob, I love you to the moon and back.<br />
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Love, mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-64525485372681165782019-06-30T22:02:00.003-06:002019-06-30T22:02:36.345-06:00I HEART MY MITOCHONDRIADear Jacob,<br />
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Tonight, I am sitting on the balcony of our hotel room with leftover wine and snacks my tribe left behind. The heat and humidity are finally fading away in the air. My feet are up after walking more than 20,000 steps in DC today. Sarah is soaking in the bath tub after walking and biking through the Capital, and seeing all the famous memorials. We're tired and happy. Over the last couple of days, families and physicians came together to share the latest research and treatments for mitochondrial disease. For a disease without cure, it's amazing the hope that you can find in a basement full of people from around the globe. It's in the air, it's in the smiles and tight hugs, and friendships made over a glass of wine in the bar. It's on our t-shirts "I heart my mitochondria". This is the place where we all share loved ones, and losing a loved one is unfortunately not so rare.<br />
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Over dinner tonight, Sarah and I talked about the last couple of days we have spent together in Washington DC. I am literally so proud of your sister. She was dragged to Miracles for Mito's events before even starting kindergarten. She has spent all holidays and school breaks possible at Children's, and knows her way around a hospital room as a seasoned nurse.This week, she volunteered at the national mitochondrial disease conference. What we both enjoyed the most was lobbying at the Capitol. We got to advocate for a new Act funding supplements and nutrition for our Mito community and NIH rare disease research funding. We learned step by step that the Capitol is a maze, and that you can get lost more than once. By the end of the day, we mastered the underground tunnels between the different buildings as we walked between the Senate and the House of Representatives. We walked the talk.<br />
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I have proudly worn our "I heart my mitochondria" shirt. Your sister told me that someone came up to her during the conference, and told her she is part of the best non-profit in the country supporting families. I am proud of her, and I could see Sarah is proud of being part of what Heather and I and so many others have created.<i> I wanted you to know this, Jacob. Your sister, who was your absolute favorite person in the whole wide world.</i><br />
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It's not just a logo on a t-shirt. I love the Power house keeping me going. I love that I know more about mitochondria than most people. I have learned to love healthy mitochondria. I have also learned the hard way what it means when your mitochondria are not working. It can be devastating, and take the life of humans we love the most, often at a too early age. It can also mean that after exercising for ten minutes, you have to spend the following three days in bed. It can mean that every doctor doubts your symptoms, and believe that it's all in your head until you meet that genius specialist who starts thinking mitochondria.<br />
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Last night, your very own Dr. Cohen got a prestigious award for lifetime achievement to mitochondrial disease. I will never forget that I last minute decided to drive to Wheatridge Recreational Center after you had had a procedure at Children's all day long. I knew the physician was going to talk about mitochondrial disease diagnosis. Right there in the rec center, I knew you had mitochondrial disease. It took five more years to prove what I knew that evening. You were demonstrating all possible symptoms but autism. I talked to Dr. Cohen after the presentation together with his metabolic doctor who was also attending. We talked about you, and we all three agreed that you needed to be started on a mitochondrial cocktail. I remember leaving the gym with a bunch of prescriptions, and a million questions in my head. I also remember leaving with a confirmation of your path and of where we were heading.<br />
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I will leave you tonight with a big full heart. The world you introduced me to will forever be mine. It's my people. It's the one place where I am not afraid of the reaction when I utter the words that you are no longer in this world. We hug a little tighter, we squeeze each other hands a little harder. We all know everyone is fighting a battle, and a little compassion and kindness will go a long way. We believe everyone deserves a little happiness. Everyone is fighting some sort of battle in this world.<br />
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It has been three long years without you. I wanted to let you know that your sister is ok, and I am so very proud of her.<br />
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<i>Sweet Jacob I love you to the moon and back,</i><br />
<i><br /></i>
<i>mom.</i>Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-13819625634894488642019-03-15T21:11:00.002-06:002019-03-15T21:11:39.282-06:00IT COMES IN WAVESDear Jacob,<br />
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I can't believe how long it has been since I last wrote. I have been thinking I should write, but I can't seem to stop long enough for inspiration to strike. This was the place I came when I needed to make sense to things in life. When I had too much on m plate, and I needed a space to breathe. I wrote about you, and I wrote to you for so very long. Tonight I am thinking back on your 13th birthday running on the beach in Lisbon, Portugal.<br />
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Waves breaking in the darkness make you focus on the sound of each wave hitting the sand. It's a sound that is both soothing and powerful. I ran in the rain on your birthday. It was a silent rain, not a down pour, just enough to get wet. Just enough to remember how much you loved the rain. We tried to protect you from rain, since it made you cold and wet. In reality, we should have enjoyed the rain more. I will never forget when we ended up in the pool in a down pour. We had the whole pool to ourselves and you just loved it. I will never forget your happiness when your speech therapist and friend took you outside to feel the rain on your hair, cheeks, and hands. You were in heaven. You sure knew how to enjoy the little things in life.<br />
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I sat on the beach before the sunrise, and wrote your name in the beach sand. No words or action could take away the heartache. Just a long day remembering you, and knowing how incredibly hard it is to only be surrounded by memories and not your actual heartbeat and beautiful face. How no wave in the world can wipe away the pain in your heart. How no wave can wipe away the sorrow of a mom's broken heart.<br />
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It was a mistake to be away from my people on your birthday. I thought by birthday number three that I maybe would be ok to live in the world. It was not as easy as I thought. I missed you terribly, and I had no one I could really talk to in between business meetings. That made me feel more alone than I have in a very long time. It was a blessing when I finally could call home late at night. I could hear the sound of the grocery bags as your pie was unpacked. The pie to celebrate you. I should have been there. The knowing that the two people I love the most in this world celebrated you together. I was just in a bed very far from home.I know I will not repeat that again.<br />
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In the loneliness of grief, I have my tribe. The ones who love you like I do. Voice messages from our friends who love you. Texts and emails of love from friends and family. I cherish each of you who reached out to me on Jacob's 13th birthday. <i>Thank you.</i><br />
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As the beautiful weekend rolled around, I ran along the beach. The sun was up. Families, couples, friends, and dogs were surrounding me. Smiles and sunshine met me on this lazy Saturday morning. My legs are not used to run any longer, but they took me six miles along the beach. It was a slow but heartfelt run. After a shower, I went back to the beach with One Republic pounding from my Beads. I sat on the beach, listened to my music, heard and saw the beauty of the waves and just sat in my grief. I sat and let the tears roll down my eyes. It was exactly what I needed. Beach, Waves, and One Republic.<br />
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I will end with a favorite poem of mine:<br />
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As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.<br />
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In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.<br />
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Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.<br />
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Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.<br />
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Jacob, you sure left me lots of shipwrecks.I love you to the moon and back,<br />
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mom<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-15292722751794021972018-12-26T22:49:00.003-07:002018-12-26T22:49:55.321-07:00TO FRIENDSHIPDear Jacob,<br />
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You know what is the absolute best for my soul? It is spending quality time with friends who love you as much as we do. Friends who truly saw you for who you were as a person. Friends who always treated you as a child. Friends who cherished you every step of the way. Friends who were heartbroken when you caught yet another infection and wrote long get well letters. Friends who baked bread and put on the front porch while we were in the hospital. Friends who brought Chipotle to the hospital and played with you right in the hospital bed. Friends who crafted with you, played dress up, and went swimming and biking with you. They made your life rich. They made your life normal.<br />
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We just had a long week of Christmas celebration together with your friends, and it was simply wonderful. It's our kind of people. We drink coffee and wine together. We talk, we walk, we talk, we bake, we drink some more coffee, we laugh, we eat. We talk a little more. We talk about the important things in life and the trivial things. Conversations, food, and togetherness all woven in to beautiful friendship. There is no special "remember Jacob" talk. It is just part of what we all do and say.<br />
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I will never forget the first play date you had with Selina and Leandra. You went to preschool with Selina. You were best friends with her and Alyssa. You did anything to be with those two girls. One day, her mom (now my dear friend Nadia) asked if you wanted a playdate at our house. It was the first true play date you had ever had. I was nervous. I was thinking they would play with you for maybe half an hour, and then what? I just didn't know how we would do playdates. How I misjudged you and the girls. It was a playdate of six hours and it was the most beautiful friendship revealing in front of my eyes. I was exhausted from carrying you around the house, but my heart was full from seeing you being so happy. You both taught me so many lessons about friendship.<br />
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When you passed and Selina found out you died, she went up to her room and wrote the most sincere letter to you. I will cherish that letter forever. The pastor read it at your memorial service. I know how important friends are to the happiness in my life. Selina and Leandra gave you that quality in life.</div>
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On Sunday, Selina and I visited with you in your room. I showed her all the things she had made with and for you. I was amazed by her memory of where and when she had crafted with you. She smiled as she saw pictures of you and her together - in the pool, at the pumpkin patch, at school, at our house and the list goes on and on.<br />
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On Christmas Day, we all went up to Flagstaff to visit with you. This is where your ashes are spread. It was cold as the sun was about to set over Boulder. The sky was dramatic as a painting. We took in the beauty of nature and you, Jacob.<br />
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Tonight my heart is full. Our Swiss friends are what my heart needs. Thank you, sweet Jacob, for having them all come in to our lives and stay in our lives. They all sweeten this Christmas.<br />
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Jacob, I love you always to the moon and back,<br />
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mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com2tag:blogger.com,1999:blog-7779196120903261978.post-45936107752350232532018-11-25T21:54:00.001-07:002018-11-25T21:54:47.170-07:00We're in it together foreverDear Jacob,<br />
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"How are you?", I said after giving her a hug and holding her hand a little longer than normal.<br />
" I am starting to feel the holiday blues. You know, it's that time of the year", said my dear friend who lost her daughter too early. It was a cold Monday night in Denver downtown. The city already lit up for the holidays. <br />
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I loved her honesty. I loved her not falling in to the "I am fine" trap. I loved her recognizing right where she was with a teary glance in her eyes.<br />
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Over the last couple of weeks leading up to yet another Thanksgiving without you, I have stated over and over again in my mind that we're on this journey together<em> forever</em>. I have to get through the holidays without you <em>every year with you being in my memory, but not physically at our table</em>. Each year being slightly different. Each year bringing the obvious screaming fact that you will not be celebrating the holiday with us in your beautiful physical presence. Grief counselors and grief specialists have already stated it. Grief is not linear. Grief is not something that just disappear after a certain amount of time. Time can heal, but <em>we're in it together. Forever.</em><br />
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I have seen your flattering eye lashes and your beautiful eyes in front of me. It comes as a flash back when I least expect it. I see the rest of your face, I hear your sighs, but the focus is on your eyes. It was hard for you to have your eyes fully open due to the energy needed, and now I appreciate more than ever those half open eyes with thick black eye lashes. Sarah and I were always envying those long eye lashes that sometimes got stuck in your eyes. You inherited them from aunt Jenny.<br />
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Jacob, I can say that I survived yet another holiday. In fact, we had a very lovely Thanksgiving with our best friends. I will love my friend forever to remind us all of your last Thanksgiving with us, and how you told us "I love you". No Thanksgiving will ever pass by without me thinking how you shared your blessing with us all the Thanksgiving of 2015. We continue to make "your" ornaments you put in to factory during the month of December to make sure all your teachers, therapists, and nurses got a special hand made gift from you. I love that you sister wrote "Love Jacob" on the ornament I silently created this year. We always have a lot of fun crafting together.<br />
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The holiday had me slow down, which was great. I slept, I exercised, I had time with your dad and sister, I caught up with friends, I baked, I cooked, I nurtured a cold. <br />
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And I decorated our home for Christmas. I love to transform our home for the holidays. I go all the way out. Every room has Christmas decorations, and so many ornaments come with a story. It's a gift I cherish each year as I am unpacking boxes of holiday memories.<br />
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I enjoyed the most to put up our Christmas tree in the basement, one of many trees in the house. This tree is full of memories. It took me down memory lane. It reminded me of all our years together. Sarah and I laughed as we remembered times in the past. Sometimes, we had to think twice if the ornament came from her or you. I cherished each moment. I cherished the past visiting the present. I cherished the fact that we have so much happiness wrapped up in a plastic tree.<br />
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You made this ornament in kindergarten with your teacher.</div>
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The ornament you made at Gemma's before you got to see Santa and tell him you wanted a "Minion fart blaster" from Santa.</div>
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Gosh! I created this ornament in 2009 during a 2 months hospital stay when we didn't know if you were going to make it home at all. You proved the doctors wrong, and we got to hang this in our tree.</div>
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My favorite ornament you made at Coyote Ridge. I am not sure what it is, but I love it.</div>
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You and I in 2009! It was a really rough year for you when we started to see the true face of mitochondrial disease. Another ornament I made in the hospital that year.</div>
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I spy a Minion! I am not sure what year you received this ornament. </div>
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You created this ornament your last Christmas. You had a terrible day of seizures, but decided to craft with Gemma's boys no matter what. You put so much effort into this one snow man.</div>
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I think you got this angel your first year of Christmas. We knew you needed an angel to watch over you!</div>
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I am grateful for all the memories we made. I am grateful for the life we lived together. I am grateful for all the life lessons you taught me. I am grateful to be your mom.</div>
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And as hard as it is some days, <em>we're in together - forever.</em></div>
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Sweet Jacob, I love you to the moon and back,</div>
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mom.</div>
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<em></em><br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-32013087990207576032018-10-27T10:41:00.000-06:002018-10-27T10:41:57.057-06:00A VISIT TO THE PASTSweet Jacob,<br />
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I went back to the PICU where you passed. I typically don’t shy away from the hard parts of life. I usually don’t shy away from a difficult conversation. I stay true to my values in life, something I learned from my grandma and parents very early in life.<br />
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I did stay away from the PICU. I stayed away from the one place where I lost you. I stayed away from the place where my heart has been beating through my chest. My heart beating of fear and worry for your life right in the middle of the ICU. The true kind of heart beating that make you lose track of time and where you feel the adrenaline kicking in, and your brain stays hyper focused.<br />
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The true reason I stayed away from the PICU was not the memories of you being sick. The reason I stayed away is because I didn’t want to relive you dying. It was as simple and as hard as that. I visit the hospital most months of the year. I have been in hospital and conference rooms, but did not enter the doors of the PICU. I knew I would one day, I just needed a good enough reason to do it.<br />
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When I got the e-mail that I was assigned to the PICU for my Board rounds, I knew this was the right time to face my fears. I was going to enter the PICU as a Board member and a Parent Partner of the hospital, but truly I knew I was going in as your mom, Jacob.<br />
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As our host and head of the PICU opened the door to the ICU with his badge, the click of the heavy door brought back a flood of memories. A click of a heavy hospital door. It reminded me of the sound of a prison cell closing behind you. I had never associated the sound that way before. The smell and colors of the walls embraced me. It was like going back in time where every little detail is ingrained in my brain. The floor I ran on the last time I made it to your room. The nursing stations, the bath room, the shower, and the many machines supporting the life of children fighting for their lives this very second.<br />
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My legs took me to the conference room, my brain still formulated the right sentences, my hand still hold on to my bag. I felt a light taste of metal in my mouth.<br />
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We all had to introduce ourselves in the conference room. I got hugs, not one but many. Many hugs because this is the tribe that saved Jacob’s life not one time, but many times. This is the team that fought our good fight side by side with us for ten beautiful years. The head of the PICU didn’t just introduce himself with his title. He also introduced himself as your doctor and acknowledged knowing our whole family. It was an intense feeling to be surrounded by the team who fought so intensely for you for so very long. The team who loved you, but was sad to see you return and cherished every time you moved up to the regular hospital floor. The team who said their goodbyes to you on June 19th, 2016 together with us.<br />
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When you needed the hospital, we actually preferred to be in the PICU. We knew there was no better place caring for you. The access to your medical team and attention to your acuity level were incredible. We always felt safe when you were in the PICU. Always. During the presentation I actually found out that our own Children’s Hospital is one of the most safe PICUs in the country. It was incredible to see the data on the screen validate our experience for ten years with you.<br />
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The one image I keep coming back to is you and I sleeping together in your hospital bed. It was often followed by many intense hours in the Emergency Room and a long intake as we finally arrived in the PICU. When everything was settled after hours and hours of tests and telling your story, the calm arrived in the room. It was only you, the nurse and I. You were typically sleeping from pure exhaustion and being on strong medications. That is the time when tears of exhaustion often came after holding it together. I got on the cover of your bed, I found a place next to you, and found your little hand. I still remember the feeling of your little hand, the shape of your nails, and your rhythmic movement you couldn't control. I have had some of the best naps next to you in the PICU. I miss the intense connection of doing whatever it takes. You and I on the hospital bed is an image that makes me miss your terribly. I even miss the green blanket we were laying on.<br />
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After the presentation, it was time for a tour of the unit. I ran into several of your nurses. They were surprised and happy to see me. We hugged, we smiled, we remembered. I felt at home in the middle of beeping monitors, scrubs, and clinical cleanliness. I even peaked in to the very room you were in the last time. The bed was occupied by a little girl. I felt at home in the shared smiles and teary eyes and so very connected to you and your past. The very meaningful life I had to walk away from to start a new life without you and the hospital we called our second home. It hit me hard to think about what it means to start over, especially when the decision wasn’t mine.<br />
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I also got to see all the improvements they have done for our families. I loved to see the Family Board right outside the shower room, and to hear that the actual shower room will be remodeled. I love that families can access the patio without leaving the unit. I sat on one of the patio chairs so many times eating my lunch or dinner and feeling the sun on my face. I love how the PICU continues to partner with us parents, knowing that we parents know our children best. I witnessed it this morning over and over again.<br />
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A good day in the PICU!</div>
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When I left the hospital this Tuesday morning to drive in to work, I felt exhausted but accomplished. I did it. It was so much better than I thought. The sincerity and true love for you made me realize that a part of you will always be on the 3rd floor of the hospital. I will go and visit again when the time is right. I know you will give me a sign.<br />
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Sweet Jacob, I love you to the moon and back.<br />
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Love, your mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-22977180852674591192018-09-01T22:33:00.001-06:002018-09-01T22:34:28.064-06:00THE THREE MUSKETEERSDear Jacob,<br />
It has been more than two months since I wrote you last. This must have been one of the longest stretches without writing. I thought I would write during vacation, but I decided to just live in the moment and enjoy family and all the fun things we did.<br />
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First time at Louvre for all of us. </div>
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I think of you all the time, Jacob. And I now know what you taught me more than anything, being fearless. I am not afraid. We all shy away from difficult conversations or being afraid to take that next step. When you have had the worst thing happen to you, you can just not be afraid anymore. It's exhausting to be fearless at times, but it's also comes with a sense of freedom. A sense of clarity and staying true to yourself at the same time as you know you have had to pay a very high price for this wisdom of life.<br />
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Me out at sea somewhere between Finland and Sweden</div>
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Jacob, I always thought I would be part of a big family. I loved being surrounded by generations of relatives on both my parents' sides for holidays, birthdays, and family reunions. The more the merrier. My grandparents' apartment always had room for another kid or relative. I receive energy from other people. That is how I keep going.<br />
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Family in Kivik</div>
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And now we're three musketeers. We had to become this close to survive without you. We're all drawn to each other to make sense of the big hole you left behind. I am not sure who started the group text, but we're always sending each other little things. Nothing special, nothing major, but always staying connected. I love that little life line. Knowing we're in it together.<br />
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I know I am a lucky mama that my girl wants to spend time with me. Believe me, I can drive her nuts. We fight. We argue. But we're close. We're really close. We love hanging out together. We love spending time together. We both know when we have the best of times together, and you're never far from our minds.<br />
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Coffee break in Paris</div>
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This summer, we did have the best of times. Work takes me all over the world. This summer, I got to take your dad and sister with me. We spent almost two weeks in Sweden. It was true vacation. I felt so spoiled by genuine family love. I didn't realize until deep into the Swedish summer nights how important it was to talk to family and friends about you. Last time I visited your dad's hometown was when I was pregnant with you, thirteen whole years ago. Many of our relatives we have not seen since you passed away. Many relatives have never met you. Family needed to see we are fine. I have so many memories I will bring into the fall and winter months from this summer.<br />
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Joakim's family on Hanö</div>
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Joakim's family in Höganäs</div>
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Coffee break with aunt Jenny and Rickard</div>
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I loved to watch Sarah interact with her family on both of our sides. I loved to watch her being a world traveler. I loved her falling in love with Sweden and Paris. Berlin wasn't too shabby either. I loved to show her the world, and make memories we will keep with us forever. I love to watch Sarah interact with different cultures, food, and more than anything friends and family. We had so much fun.</div>
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Stockholm archipelago</div>
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At sea with grandpa</div>
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Having fun on the island Sandhamn</div>
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Sarah and her auntie Jenny</div>
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Dinner in Berlin</div>
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Berlin wall</div>
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On the island Sandhamn</div>
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Jacob, the price is high. We could never have done this with you. We would go back to be the family of four we were intended to be in a heart beat, but we can't. We don't have that luxury. But we can live. We can do the things we want to do. And I do want to show your sis the world.<br />
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A heart in the Stockholm sky. I thought of you, my boy.</div>
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And from the dream of a big family, I cherish and silently appreciate being part of my musketeers.<br />
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Stockholm archipelago</div>
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Sweet loving Jacob,<br />
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I love you to the moon and back,<br />
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mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-13004838996752286172018-06-19T22:10:00.003-06:002018-06-19T22:10:59.788-06:00TWO YEARS JACOB...Dear Jacob,<br />
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<i>Two years. </i>We have seen the sun rise and set 730 times since you lost your fight to mitochondrial disease on June 19th, 2016. Some days it feels like it was only yesterday you left us. Some days it feels like forever. There is no rhyme or reason. The only thing I know is that year two was not easier than year one. It was different, but the saying of time heals all wounds is not yet true. We're still early on the journey without you. We're still defining ourselves.<br />
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I remember us packing up after your balloon release last year. We have had a wonderful evening with friends who all love you. It was a perfect sun set as your balloons reached the sky. I felt a huge weight off my shoulders. We survived the first year without you. I knew it didn't mean it was going to be easy from now on, but we had made it through all first holidays. We made it through 365 days without you.<br />
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What has been the absolute hardest year two is the realization that this is forever. We will live the rest of our lives without you. We are now parenting the memory of you rather than celebrating milestones in your life. It's different. It still hits me like a hard punch in my stomach. I am not sure how long it will take me to fully realize this. It keeps hitting me. It will take time. It will take a lot of time.<br />
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You are more alone in your grief year two. The first year, the world was watching over us. Everyone remembered our loss. Year two, our inner circle has continued to watching out for us. We love and cherish our inner circle. If anything, I know I love them even more. They let me talk and remember you with them. They are not afraid to give me an extra hug, share a beautiful memory of you, and simply acknowledge they miss you too. I love them for just that.<br />
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Sarah, your dad and I continue to figure ourselves out as a family. We're a house of cards of three instead of four. The constellation is different. It's not always easy to share grief as a family. It can create distance. For me, there are no other two people in the world that I would like to call my family and my home. I do feel in many ways we are closer than ever. They get me, I get them.<br />
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We're redefining ourselves. I am not sure how I would otherwise put it. I was so involved in your life each and every day. All those hours are now filled with other stuff. It's not just an easy switch. There are many things that I am still not sure how they will ultimately end up. I have had to learn to not always know. I have had to learn to give myself time, to not rush into decisions (which is so hard for me). After you died, I had to learn how to walk again. I can now walk. Now I am learning to run. Sometimes I reach my destination, other times I fall. It dose give me admiration for the people around me who face life changing challenges, and the resilience and strength I see in human beings. The strength of never giving up.<br />
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The topic of children is a common one. There is not a parent who doesn't love to share their children with the world. Some more than others, but it's always there. It's a common subject when there are no other commonalities. People who don't know me well are hesitant to ask about you, to ask about my children. I know. They are afraid they are going to make me upset. That the pure thought of you will leave me shaking to my core.<br />
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What I want the world to know is that I think of you each and every day. I was the lucky one to be your mom for a beautiful decade. Your strength, perseverance, and resilience continue to inspire me every day. You taught me so many lessons of life. There are so many stories to tell. There are so many memories to share. And when I least expect it, in the farthest corners of the world, I find the brave souls. The souls that want to get to know you, and to get to know me through you. I cherish those beautiful moments every time it happens. There is not a day I would not share you with the world, my beautiful boy.<br />
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Jacob, please keep watching over us. We need you.<br />
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Sweet Jacob,<br />
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I love you always to the moon and back,<br />
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mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-41543717150634332552018-05-26T23:18:00.000-06:002018-05-26T23:18:27.476-06:00SECOND YEARSweet Jacob,<br />
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A memory popped up on my Facebook page that I had completed my second Century bike ride two years ago. I smiled in to the camera. My legs felt like jelly and I smelled like sweat. I was having a melted chocolate bar in the shade before I jumped in to the car to drive home. Little did I know that you were going to stop breathing that evening after we had put you to bed. Little did I know that I was going to give you CPR that evening and bring you back to life. Little did I know that we were entering the last month of your life.<br />
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We're nearing your second anniversary. You would think it would get easier with time. You have gone through the year of "firsts". You have been there before. You know how it feels to be without you on all the major holidays and milestones of a year.<br />
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What I know is that is not easier. In many ways, year two is<i> harder.</i> The first year you are expecting it to be hard, to be unbearable. Year two, you are more alone in your grief. You mastered it already once, so you can do it again. In many ways, it's harder due to that. It's harder because there is no road map for grief. There is no straight line. Some days are perfectly ok. Some days are hurtful. You just never know.<br />
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<i>The biggest difference now is the realization that life will continue without you. It has hit me.</i> This is the new life. I don't think that ever settled in to my brain during my first year without you. It was more surviving from day to day. Now, I know that this is it. I need to learn how to live the rest of my life without you. This is my new life, and I am still learning. Each and every day.<br />
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What I know is that there are days where my feet just take me to your bench at night. The only thing I need is to sit on your red bench and watch the sky over the mountains. There are times where the only place I can be is in your room surrounded by memories. There are times where you to take over my whole heart, my whole brain, my whole body.<i> I miss you so much, Jacob.</i><br />
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I am still learning how to define life. I continue to have major changes in my life. I master them one by one. I am wondering if I one day will sit back and say it all came together. I get to travel the world in a way I never could have done caring for you. I do know it's a privilege and I do get to meet the most sincere people. Thursday night, I was lost in Toulouse walking up and down the cobble streets, and somewhere you found me and brought me back to where I needed to go.<br />
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My personality wants everything to settle into places. As you always taught me, life is a journey made of moments to cherish. I am still learning that very lesson of life.<br />
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Tonight, I am right where I should be. I am on a balcony writing to you in hot Arizona. I am surrounded by my inner circle; your dad who is my biggest rock, and your beautiful sister who always keeps me honest and who I admire for the person she is. We have spent the evening with one of your nannies, whose whole family turned into friends for life. Friends who get. Friends who have had to fight for their own son's life. Friends who tonight celebrate their son being a cancer survivor. Life is coming full circle, and you're right in the middle of it.<br />
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Sweet Jacob,<br />
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I love you to the moon and back,<br />
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mom.Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-13619864162169629522018-04-22T21:34:00.001-06:002018-04-22T21:34:38.802-06:00TO KNOW OR NOT TO KNOW <span style="font-family: "verdana" , sans-serif;">Sweet Jacob,</span><br />
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<span style="font-family: "verdana" , sans-serif;">I have been thinking about you a lot. It still sometimes feel so unreal that you are gone forever. <i>Forever. </i>It's a big word when I know what an incredible big part of my life you were, and what a big part you continue to be of who I am. I find you when I slow down in my busy life. We meet in the car, we meet on your memory benches, we meet on walks, and often there are the most unexpected triggers. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I wanted to let you know that I had a very inspiring conversation with one of you mitochondrial doctors recently. After they discovered your gene mutation CARS2, researchers around the world have discovered several mitochondrial diseases in your family of genes. Your gene family is prone to mitochondrial disease. I remember the day as if it was yesterday when your Belgian researcher wanted to do a full gene exome sequencing on you. It was still expensive, and insurance companies resisted to pay. Your doctor had received a grant to test five families he thought he could diagnose. He had picked you. He had picked our family. He told us that the chance of diagnosing you would not be an easy task. He just knew you had mitochondrial disease. He just didn't know if he could prove it. As we gave our blood samples, I remember thinking that this was maybe just another step of many keeping you in the category of "probable mitochondrial disease". </span><br />
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<span style="font-family: "verdana" , sans-serif;">Bingo! They found your gene mutation. I remember your mitochondrial doctor and neurologist being so happy. They had found a new gene causing mitochondrial disease. It didn't really change anything for us. We were already doing everything we could to treat your symptoms. It still gave us some sort of comfort. The puzzle was solved. Another piece of comfort was that we could test Sarah, and finding out she is not carrying a bad copy of CARS2. This disease will stop with you in our family, sweet Jacob.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">I found out your Belgian doctor has taken an interest in your specific families of mitochondrial disease. He thinks he can actually find a treatment. A treatment for a disease without a cure is a big deal. It's something I just never thought I would live to hear for kids like you, Jacob. The funny thing is that the treatment is something you didn't tolerate well. In fact, it triggered seizures in you. I didn't get all details, but I am very much looking forward to having this conversation with your Mito doctor to find out more details. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Having lost you, it's with mixed feelings I hear big words about treatments. If you only had kept on living for a little longer. At the same time, it gives a lot of meaning to your life. Your diagnosis led to more diagnoses, which in return led to more understanding of this family of mitochondrial diseases. Your brilliant researcher is seeing a pattern thinking he might be able to fix this - all starting with a blood sample that none of us thought for sure would lead to a new mitochondrial disease.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Science is moving faster and faster. You were seven years old when you got your firm diagnosis. Seven years of not knowing for sure. Today, babies are diagnosed within their first week of life. Parents googling mitochondrial disease as they have not yet left the hospital after their baby's birth. Parents looking at their perfect babies wondering what organ failure, muscle weakness, fatigue, and seizures have to do with their beautiful babies.</span><br />
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<span style="font-family: "verdana" , sans-serif;">With genetic testing rapidly moving forward, there is research happening around if parents and patients want or not want to know their diagnoses. Sequencing all genes today is not a big deal. You are no longer a family needing to be picked. Do we want to know what might or might not happen to our perfect baby? Do we want to know what is going to happen to us in five, ten or thirty years? </span><br />
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<span style="font-family: "verdana" , sans-serif;">It's an important question discussed over cocktails. There is no right or wrong answer. I was thinking about our journey, knowing that I would never have wanted to know everything that would happen to you in your ten years of life your first week of life. Your first week of life I was sleep deprived, but full of joy, happiness and hope. I took you for walks in the neighborhood. I fed you around the clock. I dressed and bathed you, and had never heard the word mitochondrial disease. You perfected our family. I got to hang on to the illusion of a new healthy baby for two and a half precious months. I am so very thankful for that time.</span><br />
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<span style="font-family: "verdana" , sans-serif;">As you started showing symptoms, I absolutely wanted to know. It hurts to be a mom not knowing. That is where today's technology can give answers and knowledge to families faster. The question is if you want to know the big diagnosis as your child is not yet showing symptoms? None of us could answer these questions with a yes or no over wine and vodka. Both sides can be argued.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I think deep in my heart for a long time I was hoping you would prove all doctors wrong. You would prove them you were not sick. But as the symptoms kept piling on and hospital stays got repeated, a diagnosis got you the adequate care and considerations necessary to keep you alive.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I am amazed with how fast science is moving. How much we're learning, and that the word treatment is used in the same sentence as your disease. In the middle of my own grief, I feel so incredibly proud that you, Jacob, helped to move science forward. It hurts and warms my heart at the same time, Jacob.</span><br />
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<span style="font-family: "verdana" , sans-serif;">As I think about these things, fascinated by the resilient researchers not giving up, it gives me a little comfort that your own life contributed to this path we're on, making life better for your mitochondrial buddies.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Jacob, I love you to the moon and back,</span><br />
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<span style="font-family: "verdana" , sans-serif;">mom.</span><br />
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Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com2tag:blogger.com,1999:blog-7779196120903261978.post-81904349252182906472018-03-29T21:28:00.001-06:002018-03-29T21:28:04.011-06:00IT HAS BEEN TOO LONG...Dear Jacob,<br />
It has been too long...That was the first thought as I was sitting down to write. I am sitting on a shady balcony in a summer dress, surrounded by palm trees, and distanced laughter from the nearby swimming pool. I am on vacation in sunny Florida with your dad, sister, and one of Sarah's dear friends. We have had a wonderful spring break together.<br />
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It has been too long, Jacob. I needed a vacation to slow down after probably one of the most crazy intense couple of months of my life. Work and travel got the best of me. It has been a true whirlwind.<br />
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Florida brings back a lot of memories of you. This is the place we vacationed together out of State. We went to Disney World twice. This is where your Make-A-Wish trip went eight years ago. The place we're staying at is pretty similar to the place we stayed the first time we went together as a family.<br />
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Riding "It's a Small World" in Magic Kingdom the other night I smiled thinking of you never getting off the ride. You rode and rode around the world as the lyrics got stuck in our heads and the rain was pouring down outside. I knew where I changed your diaper as Joakim and Sarah went down Splash Mountain. I remembered us getting stuck on the train in Magic Kingdom, and you being your very happy self. Nothing could stop your happy smile. Strolling through Epcot Center yesterday, I remembered you and Sarah gotten your passports stamped in each country. I found the restaurant we had dinner at sunset. I remembered you sitting in the lap of Cinderella, Belle, Sleeping Beauty and all the other princesses and Disney characters. We have so many happy memories with you right here. Happy, but also painful because you are not by our side any longer.<br />
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It has been 21 months since we parted ways. 21 months. I can operate in life. For many people around me, they would say that I am doing quite well. What might not always be visible on the surface is that the pain can still be so raw. <i>We have still had more times with you than without you</i>. We still know life with you so very well, but yet details are fading. I still can ramble off your daily schedule as if I would jump in at any hour of the day. Yet I don't remember the exact doses of all your medications any longer. The fact is that I don't need to remember your medication schedule by heart anymore.<br />
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After 21 months I am still searching for how to live life without you. I am searching for answers. As I was walking on the beach the other day, I was searching for you in the ocean, in the waves, in the sky, and in the sand. I finally found you in the formation of birds that was ever changing. At one point, you formed a heart. You looked so happy surrounded by your peeps.<br />
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I reminded myself to be patient with my grief, with my pain. I reminded myself that answers will come with time. I reminded myself that living with you I never knew how the day would end. I never knew what next week, next month would look like. I reminded myself that change is the only constant in life, and I deal with change every day. I reminded myself that answers will come when time is right. A lesson I have to keep reminding my impatient soul of.<br />
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Sweet Jacob, it has been wonderful to slow down this week. It has been bittersweet and hard to go down memory lane with you for the last week. It has been fantastic to see your sister and her friend laugh and share lives with us including on this crazy ride Space Mission that got the best of me. Your dad and I know how to relax and vacation together.<br />
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Tomorrow night we return to the crazy busy lives we live. I will make sure to not let time pass too long before I visit with you here again.<br />
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Sweet Jacob,<br />
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I love you to the moon and back,<br />
<br />
mom.<br />
<br />
<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-73143721823148549562018-02-11T20:26:00.001-07:002018-02-11T20:26:15.603-07:00I AM BECOMING A STORY TELLER<br />
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Dear Jacob,<o:p></o:p></div>
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I am sitting on a plane leaving sunny Los Angeles behind.
Tomorrow morning, I wake up in London to fly on to Berlin. It was a hectic
week. Work was crazy busy. Your dad was out of town, and I realize how much he
does around the house and driving your sister all the places she needs and
wants to go. We’re gearing up for our silent auction dinner, and there are
little details to take care of each day. I was also gearing up to leave town
for two weeks to travel the world.<o:p></o:p></div>
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In the middle of this crazy busy week, I got to tell your
story. Not once, several times. I got reminded of the power of storytelling.
Storytelling is far more powerful than graphics and statistics. Storytelling
paints a picture of why we do things. Stories make people connect. Stories make
the world make sense.<o:p></o:p></div>
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As you know, I have been passionately involved with
Children’s patient safety work for years now. Five years ago, the hospital
re-branded and reinforced their safety program. They made a commitment to zero patient errors. It’s not a small undertake considering the human process
behind healthcare, and the thousands of processes each healthcare provider follows
each hour of their day. We have lived the healthcare system. We know it’s easy for
a human error to sneak in. No one goes in to work thinking they are going to
make a mistake, but mistakes and errors do happen. I make them too. Each and
every day. I learn from them, and I hope to do a little better the following
day.<o:p></o:p></div>
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As part of the patient safety program, we got to tell our
story. We were the family featured as part of the Target Zero program. We were
the family behind the data, statistics, and graphics. We gave the face of what
it meant to have a child at Children’s that we didn’t dare to leave alone in
the care of the hospital staff due to the fear that something would go wrong.
We were the extra eyes and ears of you, Jacob. The video turned out to be
powerful, and has been watched by all employees at Children’s. Each new
employee is still watching the video as part of their new employee orientation.
<o:p></o:p></div>
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This week, I got to be part of celebrating the five year’s
mark of the hospital’s patient safety program and the successes the hospital
has achieved in this time. I got to reflect on you and the video that had such
an impact on the staff. I started out by asking who remembered the video, and I
had a room full of several hundred employees who raised their hands. It was
such a testament to you, and the impact you had and continue to have on
Children’s. As the Chief Quality Officer said, they continue to cherish you in
their daily work. It made my heart complete. It made me understand the power of
your life, of your story, Jacob. It made me a very proud mom.<o:p></o:p></div>
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Two days later I was back at Children’s again for Alice
105.9 Radiothon raising funds for Children’s during 24 hours. Joakim and I had
recorded your story with the radio station in advance. I now got to hear your
end of life story on the radio for the first time, and as I was sitting in the
Atrium with a big heavy headset on my head across from Steve from Alice 105.9 and
tears were slowly coming down my cheeks. Steve gave me a Kleenex and smiled
encouragingly to me. After the montage, he interviewed me. I got to tell all
listeners about the fantastic kid you were, and how you taught me to live in
the moment. How Children’s it’s still a happy place despite you not being part
of it anymore. </div>
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As Steve was interviewing me, one of the hospital’s board member
was moved by your story and decided to triple all donations coming in for the
rest of the hour. I once again got to witness the power of your story. I got to
witness what moves someone to triple all donations by simply hearing about you,
Jacob. It was very powerful. That I got to have Sarah, my dearest friend and
partner in crime Heather, and your fabulous nurse Ana by my side this afternoon
was heartwarming. Text messages and messages on social media from friends
listening to your story made me very happy and teary eyed. I felt very supported.<o:p></o:p></div>
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Friday morning, the radio station ran your story again. I
had to step away in the middle of a meeting to listen to it one more time.
Tears filled both Joakim and my eyes as we were listening to your story together
in our kitchen. Joakim gave me a kiss as the story ended. No words, just a
message of love and knowing we were the luckiest two people in the world being
your parents for ten years. We would have done it no other way. We are the luckiest people
in the world. <o:p></o:p></div>
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Once again an anonymous donor was touched by your story, and
decided to triple everyone’s donations for one hour. We just told your story,
we didn’t make anything up. Your story touches hearts and people everywhere,
and continues to do so. It makes me so very proud knowing I am your lucky mom.<o:p></o:p></div>
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In the middle of busyness this week, I decided to become a
story teller. Your story is the most powerful story of all stories of my life,
but there are so many more. I decided to use storytelling in my work and
outside of work to connect with people. To be real in life, and to never, ever
forget the legacy you have left behind. Your story is worth telling each and
every day. Thanks for giving me yet a parting gift, the gift of storytelling.<o:p></o:p></div>
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Jacob, I love you to the moon and back always,<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mom.<o:p></o:p></div>
<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-22224205341135876292018-01-31T21:23:00.001-07:002018-01-31T21:23:24.378-07:00HAPPY 12TH BIRTHDAY JACOB!Dear Jacob,<br />
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Last night, I had it. I had ended an intense business trip, and I was on my way home. On the plane, I finally relaxed. I grabbed my phone, and started scrolling through old pictures of you. Picture after picture brought back memories of us. We were a powerful duo. I miss Us so very much. It was a late flight, so the lights were off. In the darkness, the tears were coming. When the seat belt signs are on, there are no Kleenex around.<br />
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Today, we took the day off to simply remember you. What a treat, Jacob. Your dad and I went for a long sushi lunch followed by a movie in the middle of the day. We talked about you, and remembered all your beautiful birthdays.<br />
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When Sarah came home from school, we took Max for a walk. We ventured up to your memory bench with red and blue balloons in our hands. We wrote our birthday messages to you, and sent up our balloons in the sky. I sat on your bench and followed the balloons as they got smaller, and smaller, and smaller. The sun was starting to set, and it was a magic sky. It was a perfect Jacob moment.<br />
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Tonight, we had dinner together and Sarah made sure we had sweets and chocolate. A dear friend baked a cake for your birthday to Sarah's delight. We were simply hanging together, something we always did with you.<br />
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Friends and family surrounded us all day with messages, memories, songs, pictures, and gifts. That carried me through the day. Your legacy and memories are powerful. It made me smile through tears. It made me realize how loved you are. It made me realize that we all need a beautiful tribe. A tribe remembering you, and cheering us on.<br />
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Happy happy 12th birthday, sweet Jacob!<br />
<br />
I love you to the moon and back,<br />
<br />
mom.<br />
<br />
<br />
<br />
<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com1tag:blogger.com,1999:blog-7779196120903261978.post-84639691514039416242018-01-20T20:59:00.001-07:002018-01-20T21:20:04.585-07:00HELLO BIRTHDAY MONTHDear Jacob,<br />
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<div>
We're once again deep into your birthday month - without you. You would turn twelve in a a week and a half. Twelve. An unimaginable number. A number that makes me feel the distance from your last birthday, your tenth birthday. Soon two years since we got to celebrate your big day. I always wanted to live without regrets when it came to you, Jacob. Your tenth birthday was a fantastic celebration of your life that the experts doomed as early as a few months into your life. It was a superhero birthday, so very fitting to the largest superhero I will ever meet in my entire life.<br />
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If you know me well, you know I can make decisions quickly. It's a good thing most of the time. That made my agony even larger this time last year. I just couldn't make up my mind what to do with your first birthday in heaven. How could we celebrate and honor you as our hearts were aching? I had a million ideas, and none felt right. It was so important to me that we remembered and honored you in the most perfect way. </div>
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In the end, I got saved. I didn't know what to do, and your kindergarten teacher came to the rescue. She organized the most beautiful celebration for you. Your school memory bench was installed right in time for your birthday, and the entire school sent up balloons to you to celebrate your life. It was such a moment of love, and I was once again taken back by the impact you had on all the kids at your school. They loved you deeply, Jacob.<br />
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After the ceremony at your school, your dad and I went skiing for the day. It was a day of Colorado skiing with a clear blue sky and good snow. I felt free at the top of the mountains, free in the sense that my mind could run free, and you found me on the ski slope.<br />
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At night, we celebrated you with Sarah's favorite dinner - steak, potato gratin, and of course cake! I have to admit that I gave out a big sigh of relief as your 11th birthday passed. I had had to gear up for grief for Halloween, Thanksgiving, Christmas, and your birthday. Three long months of celebrations without you.<br />
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Christmas was rough again. It will never be the same without you in it. Your death swept away some of the Christmas magic. It will never be quite the same without you in it.<br />
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The agony for your birthday has not found me yet. I think I have come more to terms with the fact that you continue to live inside me every second of the day, guiding me through life. It's a powerful force only I know of. I think people might get a glimpse of you as I am standing tall. But my decision making and choices in life are very much guided by all the things you taught me. By you.<br />
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What I want more than anything for your birthday is to take a break from the busyness of my life. I want to enjoy a cup of coffee on your memory bench reflecting over you. I want to go skiing, if the weather agrees. I like the idea of flying down the hill. And then there will be cake. Sarah's face lit up when she heard the word cake.<br />
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We will find a way to celebrate you for who you will always be.<br />
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Sweet Jacob, I love you to the moon and back,<br />
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mom.<br />
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Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-55583366931634936932017-12-30T23:08:00.001-07:002017-12-30T23:08:48.141-07:00WHAT I KNOWDear Jacob,<br />
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We're nearing the end of 2017, and it's time to reflect on the year that is about to end. If I would use one word to describe this year, it is <i><b>change.</b></i><br />
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It was the first full year without you, 365 days to be exact. We endured more "first" milestones without you from your birthday to your first year anniversary in heaven. There was a build up to each and every milestone. Unspoken unwanted unfilled expectations of how it would all turn out. In the end, I can say that there was a big sigh of relief as the sun set on June 19th. We made it through the first year without you. We got through a year of "firsts", each bundled up with sadness, happy memories, and void. We got out of bed each and every day. We chose life each and every day. It sounds so simple, but yet so hard when you are no longer with us.<br />
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This was the year of us continuing to adjust to a family of three. Jacob, you know us better than anyone, and we have been able to build a new house of cards with three thick walls. Your sister is our absolute highlight. She is a compassionate, warm, funny, smart young woman. Yes, she has her mood swings as any teenager, but more than anything she simply lit my heart each and every day. She makes me smile and laugh. One of my highlights this year was when your dad went off to California for a floor ball tournament, and I got her all to myself for a whole weekend. Best weekend ever!<br />
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Our trip to Mexico was a highlight for us three.</div>
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Your dad and I have discovered things we love to do together. We have probably done more spontaneous date nights this year than ever before. That is still an odd feeling that we can simply take off. It's still ingrained in us that one of us should stay back home. It's still hits me how crazy it is that we both are laying next to each other in yoga or sweating next to each other in spin class. It's a gift that we like to do things together. The best part is biking together. Your dad is a natural biker, and we loved completing Courage Classic together in memory of you this summer. It's special to share Colorado natures together.<br />
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I have had a huge year of learning at work. It seems like every couple of months I was asked to take on more responsibilities. As soon as there was a sense of routine, some new challenges were coming my way. I know I am incredibly lucky to love what I am doing. I see people get stuck at work, and not knowing how to enable a change for themselves. It's a big leap of faith to let go of bad routines and patterns to unravel in the unknown, but it can be so good. My lessons from life with you are helping me tremendously at work. Stress, politics, and drama can't totally get me when I know what is a true emergency and what it truly means to lose what is important in life. It's a calm that can only be learned the hard way. It makes you brave in the middle of chaos. That I got to travel all over Europe and Asia and connect with family and close friends as part of my work was a huge bonus. I leave this year with many fond memories from London to Lisbon to Berlin to Tokyo and Singapore.<br />
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Hanging with my dad in Norway.</div>
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Seeing Nadia in London.</div>
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Meeting Madelon in Lisbon.</div>
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Spending time with my sister in Berlin.</div>
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What I know today is that the happiest people are people who are happy with what they have. People who are not constantly striving for what they don't have or wanting to be something else than they are. People who are not wanting to change their loved ones to be something they can never be. I am starting to think this is the <i>key to happiness</i>. To simply be happy for what you have. It's not always easy, but that is how you find joy in life. I miss you dearly, Jacob. But I do best on days when I can cherish and feel the tremendous gratefulness that I was the lucky one to be your mom for ten years - rather than the days when I am wondering why we only got ten years together. It's all about if the glass is half full or half empty. All lessons we all know so well, but it's an art to truly live by these simple rules of life. Some of my happiest people come with a history they carry beautifully on their sleeve.<br />
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What I know is that losing your child is one of the things people dread more than anything in life. Most people can't even imagine life without their children. They have no problem to tell me that to my face, and I am always wondering what is an appropriate answer to that statement when this is not a theoretical statement but my reality. We all have a journey, a journey guiding us each and every day. My journey was ten wonderful life changing years with you that will continue to guide me each and every day. I can't imagine myself without that legacy, and how you formed me. It's my journey, and I am proud of it. I know people are still afraid to remind me of you, but I live by you in everything I do. I don't want to hide that history or legacy. In fact, I couldn't be more proud of our years together, and what it did to my outlook of life. So, what I know today is to not shy away from friends' and families' past. It's part of who they all are today, and people live and learn by their history. It's all the beautiful wrinkles telling a story of true life. Mine I am forever grateful for.<br />
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Tonight, I am counting my blessings and what I know. I am looking into a new year with a curious eye, and hoping for a new year of moments of joy, happiness, and love as I continue to carry you in my heart each and every day.<br />
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Sweet Jacob, I love you to the moon and back,<br />
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mom.Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com2tag:blogger.com,1999:blog-7779196120903261978.post-86655593241828659942017-12-17T21:19:00.000-07:002017-12-17T21:19:05.840-07:00I NEED ME SOME JACOB LOVEDear Jacob,<br />
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Christmas is around the corner. It's exactly a week away. The two last weekends have been busy with Christmas parties, A Christmas Carol, Christmas music, baking and gifting. Our house is filled with decorations including your room. Your little tree with your wooden ornaments is up as it has been for as long as I can remember. I love to take Max for walks at nights with all the Christmas lights in the neighborhood. The last weeks have been filled with the things I love about the holidays.<br />
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Making Jacob ornaments</div>
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Celebrating Advent.</div>
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Sarah making a Gingerbread house.</div>
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A Christmas Carol</div>
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Swedish Lucia</div>
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Saffron buns</div>
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Homemade gingerbread cookies</div>
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Your stocking is up.</div>
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Christmas party at Children's</div>
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In the middle of celebrating Christmas, I have a void. I don't know any other way to put it. The longing for you is suddenly so much larger and deeper than a regular day or week throughout the year. There are memories of you everywhere. You were part of everything Christmas. It's the time of year we slowed down a little, and made precious memories together. We often were reminded about your fragility. You often came home in time for Christmas from long and frequent hospital stays.We knew what it meant to be thankful, and not take things for granted. How I sometimes miss how difficult and at the same time extremely simple life was with you. I simply miss you.<br />
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Yesterday morning I woke up, and I felt rested. It doesn't happen often with a job that gets me up hours before the sun rises. I grabbed my coffee, and ended up on your couch. I really love your room, and I am so happy we have kept it a place for us to remember you. I just took in everything, and let me sit in your memories. I so know that it was your time to go, but it still makes me so sad that we didn't have more time together. I sat in my grief, and suddenly your room was filled with laughter and chatting. Your dad, your sister, and our dog Max all joined me. I had this vision that you were actually sitting right there with us, enjoying our silly conversations and watching our dog always wanting to lay on your couch. It's his favorite place in the whole house.<br />
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Today as I was driving in the car, a thought flashed through my mind. <i>I need me some Jacob love</i>. I see how I gravitate towards people who loved and love you right now. I surround myself with friends who truly got you, who saw you for who you were. I need them because they got you, they get me. As much as I miss you, I do know I am sincerely lucky to be surrounded with <i>Jacob love</i>. It's a powerful force. In fact, one force that keeps me going each and every day.<br />
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Sweet Jacob, I love you to the moon and back,<br />
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mom.<br />
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<br />Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-88391717636054621422017-11-26T14:36:00.003-07:002017-11-26T14:39:55.217-07:00THE SEASON TO BE THANKFUL<div class="MsoNormal">
Dear Jacob,<o:p></o:p></div>
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I am finding myself back at Children’s Hospital on this
gorgeous Sunday afternoon. I am sitting outside in the sun in only a sweater.
There is a slight breeze in the air, and if you would have been here with me,
we would have gotten an ice cream to share. You would have been bundled up in
blankets, and you would have loved the sun against your cheeks. Christmas
lights are up. I know there are here to cheer the families on, but I remember
being kind of sad to see the twinkling lights from the hospital window. It
meant you were sick, and that we couldn’t enjoy the holidays from home. I also
see my familiar running path around the hospital. Today would have been the
perfect day for a run around the hospital, and stretching by the big red snake Jake
and watching the blue sky. I can’t deny it I do miss this place. There were
lots of time I worried about you, sleepless nights, and scary times, but this
place always left me with a sense of gratefulness and thanks for being such a
big part of our lives.<o:p></o:p></div>
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Today, Sarah is volunteering in the gift shop, and it was my
turn to drive her. Due to recent work travel, I haven’t been at the hospital for
about six weeks. It’s a pretty long stretch considering that I typically come
here for at least one meeting per month, and driving Sarah for her
volunteering. There are not many people in the hospital on this Sunday. I know
the doctors have tried to send home as many patients as they can for the
holiday.<o:p></o:p></div>
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We celebrated our second Thanksgiving without you. Holidays
are <i>hard</i>. There is not a Thanksgiving I don’t remember how we celebrated it together.
It makes the loss more real. The feeling that <i>you</i> are missing around the table.
That imaginable empty chair, and the expectation that we should all be thankful.
It seems contradictory, but you taught me that you can be both. There can be
moments of grief and sadness and moments of gratefulness and joy. This past
holiday I felt both. We have friends we call family, and we had a wonderful day
together. After we got home, I took a moment to sit in your room and simply
remember all the details of you and your room on a late evening – the sounds,
the smells, the lights, and the taste of a wet kiss against your so very kissable
cheeks. <o:p></o:p></div>
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This holiday we lost a friend on Thanksgiving. Someone who
has been in our lives as long as we have lived in Colorado. We didn’t know she
had been battling cancer for years. We only found out the day before Thanksgiving. We were hoping it would be time for us to say our goodbyes this
past Friday, but she passed on Thanksgiving. She didn’t want her disease to
define her. She wanted to be the person we always had known. I was thinking how
supportive she always was of you. I now know that she probably could relate more
to you than I ever knew. She will be missed by many, and I think about her dear
husband having to find a new normal.<o:p></o:p></div>
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As we go in to another holiday season, I am making myself a
promise to slow down a little and remember all the beautiful gifts you gave us.
It’s easy to get caught up in the “musts” and "to-dos", and I will try to stay true to
myself. Enjoy moments of happiness and joy, reflect on you and let grief find
me when needed, and simply be thankful for this crazy life of mine. <o:p></o:p></div>
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Sweet Jacob, I love you to the moon and back,<o:p></o:p></div>
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Mom.<o:p></o:p></div>
Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0tag:blogger.com,1999:blog-7779196120903261978.post-66298489376479701112017-11-19T19:03:00.004-07:002017-11-19T19:06:01.987-07:00SIGNS OF LIFE<div style="font-family: Helvetica; font-size: 11px; font-stretch: normal; line-height: normal; margin-bottom: 8px;">
Sweet Jacob,</div>
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It has been a long time, since I wrote you. Life has been busy, and work has taken me around Europe once again. As hectic as those trips typically are, you usually found me somewhere in the world. After ten years of not traveling due to not being able to leave you, I can now take you with me anywhere I go. </div>
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I got to spend the weekend in Berlin with your aunt Jenny. It was a weekend that warms my heart. We got to spend time together from morning to late into the night as we explored one of our favorite cities in Europe. We ventured into beautiful Berliner Dom, and we lit a little candle for you. I love to do that as I visit old churches. It gives me peace and a moment to reflect on you.</div>
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This time of the year we almost always were at Children’s. I can’t even separate the different years any longer. Were we at Children’s before, during, or after Thanksgiving? It was the toughest season for you. Your last years of life you were hit with bad flare ups of ulcerative colitis that made you so very sick. A memory popped up on my Facebook feed from one of those years you were in the PICU today. You had a big band aid on your neck, and the photo took me right back. The band aid tells me that you were very sick, since they had drawn blood from somewhere else than your medi-port. I never ever liked when they had to go for your neck or head. What lit up the picture was your sister next to you. You two had a very special bond. I had to step away when Sarah was around you because you two didn’t need anyone else – just each other. It makes me tear up just thinking about your special relationship. Sad because it only lasted ten years, happy because it was an incredible sibling love for all your life. </div>
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I read something about grief in a magazine on the plane today. If you ever have lost someone close, you will never put your grief completely behind you. But as time goes by slowly signs of life start to make its’ way back again. It doesn’t happen all at once, but look for those signs, and allow them to enter your life again. </div>
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Going into another holiday season without you, it does feel a little easier this year than last. As much as I know how loaded holidays can be with mixed feelings and missing my “old” life with you, I am looking forward to preparing and celebrating Thanksgiving with dear friends. We now have our tradition that we make “Jacob ornaments” before sitting down for dinner. Crafting was something you loved so much. </div>
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Your sister can’t wait for me to come home, so we can start decorating the house for Christmas, and enjoying our holidays together. As I got off the plane in Newark this afternoon, I had a text that she had started listening to Christmas music. She is becoming my little mini me when it comes to the holidays. Your dad will turn into a very loveable Grinch! </div>
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Jacob, I love you to the moon and back always. </div>
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Please, come and find me this holiday season.</div>
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Love, mom.</div>
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Mariahttp://www.blogger.com/profile/01092405595484191309noreply@blogger.com0