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The Endless Journey

Thank you for joining me on this journey of grief, healing, and hope. For accompanying me in the search for light in the darkness as I’m learning how to survive the loss of my child.

This wasn’t a journey that I was prepared for or even wanted to be on for that matter. The road was rough, with curves and detours along the way and it lead me to a destination from which I can never return. I began the journey with my son but I lost him along the way. Cancer was the vehicle. Death was our passenger. I now realize that my journey is not over, nor will it ever be. I’m learning that the road of grief is unending. The scenery may change along with my emotions but there is no final destination in sight. I will be on this journey until the day I die.

Graduation – Class of 2021

As graduation approached this year, instead of being busy making preparations for Micah’s graduation like I should have been, I was flooded with waves of grief. Little things would set off another stream of tears as the pain of missing Micah intensified at another missed milestone. Thinking about the things we should be doing, made me wish he was here to be a part of all of the events surrounding his graduation. It made me sad to think that we wouldn’t get to do those things with and for him.

As I look back over the past few weeks, I realized that although I shed tears of grief, many of my tears were brought on by the kindness of people in our lives and at the joy of seeing Micah being remembered. It began when I received a call from Micah’s guidance counselor a few weeks before graduation, letting me know that they would be reserving a seat for him with his class at the graduation ceremony and that we would be given tickets so we could attend the ceremony. The phone call caught me off guard and brought on an immediate flow of tears. I was so choked up that I could barely respond, to thank her for remembering him.

Just a few days later, I received a message from our pastor asking if we’d be ok with them doing something for senior recognition Sunday as a way of remembering Micah. Every year, the seniors receive a quilt made by women in our congregation. In memory of Micah, they made these beautiful quilt blocks that were framed and placed in the front of the church along with a candle. These quilt blocks were made with love and were given to us as a special keepsake.

As I walked into church that Sunday, I saw the traditional slideshow of the seniors projected in the front of the sanctuary. There were photos of the graduates as young children along with their senior pictures. A few other random photos were mixed in, including some with Micah in them. At the end of the slideshow, they included several pictures of Micah, remembering him as part of the Class of 2021. Seeing those pictures brought tears of both grief and joy. Although I had planned to bring tissues with me that morning, I had inadvertently left home without them, leaving me with nothing but my hands to wipe away the tears that flowed almost steadily throughout the service.

Towards the end of the service, after the presentation of the senior quilts, one of Micah’s classmates came and asked if she could sit with me. I had been sitting alone in church that day since Annika and Peter weren’t able to be there and I’m sure she noticed how difficult this day was for me. Her gesture meant so much to me. It was as if Micah had sent an angel to comfort me through that simple but meaningful act. Between that and the hugs and kind words I received from some of Micah’s friends and other congregation members, I felt so much love as I struggled with my grief.

The next night at the high school band concert, there on the stage, in the place where Micah would have been sitting and playing his saxophone, was a chair, draped with a band uniform and his picture. When I saw this, again, tears of gratitude and grief filled my eyes as I struggled to choke back the tears.

At the graduation ceremony, there were two chairs that were different than the rest. They both held a graduation cap and gown, placed there in memory of Micah and another classmate who had died in a car accident. Both boys were mentioned in their classmate’s graduation address and their names were read at their place in the alphabet when they would have been given their diplomas. Our family and the family of the other student were given the cap and gown, a senior t-shirt with the names of the entire class, theirs included with a pair of angel wings, and an honorary diploma.

After the graduation ceremony, Annika and I left for a girls weekend at the cabin with the women in Peter’s family. It was late when we arrived but as we made our way to bed in the dark, I could see that they had decorated the cabin with purple and white streamers, balloons and flowers and had made a sign with his name on it. Our lunch the next day, which was planned by Micah’s aunt and cousin, was walking tacos and watermelon, two of Micah’s favorite foods. If he would have been able to plan the menu for his grad party, I’m pretty sure those are two of the foods he would have chosen.

I received this picture of some of Micah’s friends who had gone to the cemetery to visit his grave the day after graduation. Another classmate and her mother stopped by with some flowers. We also received some cards and a few gifts letting us know that others were remembering Micah and our family,

Micah even showed up in the photos at some of his friends’ grad parties. Unfortunately, we were only able to make it to one of them due to schedule conflicts but it was so great to see pictures of Micah as we were looking at his photo display. A friend of mine shared with me that Micah had shown up at all of the grad parties that she had attended. I’m sure he wouldn’t have wanted to miss any of them.

I thought that Micah had missed out on his graduation but in reality, he was there every step of the way. He was remembered at all of the main events with his pictures included in the senior videos and slideshows, his seat reserved at his concert and graduation and being remembered by friends and family, even having a graduation reception. Although it’s certainly not the same as having him here, we were so touched with the ways that people honored his memory and made our family feel so loved and supported in a very difficult time. The kindness of people still overwhelms me. I didn’t know that a heart could be broken and so full at the same time.

The Thief

Jil and Angie at the Princess Warrior 5K in September of 2018.

I was so honored to be asked by my friend Jil to be a guest blogger on her Princess Warrior Foundation site. We met over 25 years ago through work and kind of lost touch over the years. It was after the death of her daughter Jane from Leukemia and during and after Micah’s cancer diagnosis and death from Rhabdomyosarcoma that we were reconnected. Cancer had made both of us members of a club to which neither one of us wanted to belong, that of bereaved mothers. Before Jane died it was her wish to create a legacy 5K that would help raise money so that other kids and their families would not have to go through the pain she did. Her mother honored her wishes and has created the Princess Warrior Foundation in memory of Jane. In September they will be hosting their 10th annual Princess Warrior 5K Run, Walk, Roll, Stroll or Crawl event. If you’d like to check out her website and see how the foundation helps others, you can find it here:

https://www.janefiemeyerprincesswarrior.com/

This is the blog post I wrote for her Princess Warrior Foundation website:

When our fourteen year old son Micah was first diagnosed with Rhabdomyosarcoma, a rare form of pediatric cancer, I didn’t fully grasp the grandiosity of it. Of course I was aware that a cancer diagnosis was never a good thing but since I knew of many adults who had survived other forms of cancer, I assumed it would be the same for Micah; that this would simply be a “bump in the road” for him, an obstacle that he would have to overcome. I’m not sure if I was in shock, denial or just ignorant when it came to my knowledge of cancer but I assumed he would have surgery to remove the tumor, be treated with chemotherapy, radiation, or a combination of the two, and that would be it. I naively believed that once his treatment was complete, he would be able to pick up his life where cancer had stepped in and move on, as if it had never happened. I never imagined it would be a death sentence for him.  

Unfortunately though, just eight months after his initial symptoms began, my husband, our daughter and I found ourselves standing beside Micah’s hospital bed in the early morning hours, saying our final goodbyes as he took his last breath. Cancer had stolen Micah from us. We lost a son and a brother that day. At that moment, we were faced with the reality that cancer had taken someone precious to us but I don’t think any of us realized that this was just the beginning of a series of losses we would experience as a result of cancer invading our world and taking Micah’s life. 

Of the many secondary losses that we would experience as a family, one of the first ones we encountered was the loss of our family structure as we knew it. Our family of four had suddenly been reduced to a family of three. Annika had gone from having a sibling for as long as she could remember to feeling like an only child. The first time we sat down to eat at our dining room table after his death, we struggled with what to do with Micah’s empty chair, as he usually sat between Peter and I with Annika on the other side of me. Do we leave his chair empty as a way of holding a space for him, or should one of us shift to that spot to bring us all closer together? Filling the empty chair wouldn’t fill the void that we were feeling but it would at least bring us physically closer. Who knew that sitting down for a family meal could bring such pain and heartache?

Cancer not only stole our son but any future plans he had for his life. When I think of Micah and Jane and so many other children whose lives were cut short by cancer, I can’t help but think of all of the life experiences that were stolen from them. They were robbed of the opportunity to do the typical things that should have been part of their futures; spending time with friends and family, participating in school activities like sports and music, dating, experiencing their first kiss, going to prom, graduating from high school, attending college, choosing a career, falling in love, getting married, and having children of their own. The list goes on and on. As we see our children’s friends reaching these milestones, it’s like we’re losing them all over again. Although we enjoy  seeing their friends and classmates moving on with their lives, it’s difficult knowing that our children will never get to do those things.

Even those children who survive their cancer diagnosis don’t escape unscathed. Maybe it’s their sense of peace that is stolen from them as they are left worrying about if and when their cancer will return or if they will develop another complication later in life as a result of their cancer or treatment. Maybe it’s the loss of a portion of their childhood, as they spend months or even years fighting cancer and undergoing treatment. They trade time that should be spent doing everyday childhood activities with hospital stays, chemotherapy and radiation treatments.  Even though these treatments are crucial in eradicating the cancer, they are so toxic that they cause most children to lose their hair and feel sick the majority of the time throughout the treatment period. Not only does it oftentimes result in long term physical damage to their bodies, they carry the emotional scars with them as well.

Micah should be graduating from high school this spring and thinking about his future plans. Instead, we are left remembering the past, treasuring all of our memories with him and hoping that we never forgot all of the little things that made him who he was. In spite of the pain and overshadowing sorrow that we have experienced after his death, I would never trade the time that he was here with us in order to avoid that pain. As so eloquently stated by Alfred Lord Tennyson, “Tis better to have loved and lost, Than never to have loved at all.” Although cancer has stolen so much from our families, it can’t steal the love that we have for our children, whether they are physically here with us or not, and it can’t steal our memories.  Some things are eternal, including the love we have for our children.

Cancer has dramatically changed our lives and we will never be the same. However, in spite of all that it has taken from us, it has also brought us into community with others who have experienced similar loss, resulting in new friendships and an even greater network of support. No one understands what it’s like to lose a child better than another grieving parent. It was through Micah’s diagnosis and death that I was reconnected with Jil and for that, I am forever grateful. 

The Princess Warrior Foundation was created because Jane had a dream to find a cure for cancer so that others wouldn’t have to experience the pain and sadness that comes with a cancer diagnosis and because her mother, Jil, is honoring her wishes and working to make Jane’s dream a reality. Like Jane, I also dream of the day when there is a cure for childhood cancer so that no other child will have to face the uncertainty of what a cancer diagnosis means for their future and so no other family will have to worry about having their most precious treasure stolen from them. 

“Don’t You (Forget About Me)”

Every once in a while as I’m listening to music, one of the songs from Micah’s playlist will come on, bringing back memories of him. Recently, the song “Don’t You (Forget About Me)” from the movie The Breakfast Club began to play. I can’t remember if Micah actually saw that movie before he died or if he knew the song from when it was referenced in the movie Pitch Perfect. Either way, it made me think about the little ways that some of Micah’s friends and family have shown that they have not forgotten about him. When people share these things with me, it makes me feel so good to know that even though he hasn’t been here physically for over two and a half years, he continues to hold a place in people’s thoughts and hearts.

One of Micah’s friends left a painted rock at the cemetery by his gravestone when he stopped by to visit his grave. Another remembered him by wearing his #Team MicahFishing for a Cure wristband for his senior pictures as a way to include him. A couple of others wore their wristbands to prom; taking Micah with them since he didn’t have the opportunity to attend prom in his lifetime. His cousin made a point of including a picture of Micah in his photo display at his graduation party so Micah could be there too, like he would have been if he was still here. One of his aunts sends us a picture via text on the 3rd of every month, remembering the anniversary of the date he died. It’s often a picture of his name spelled out in something she has created somewhere in nature or with one of his favorite foods. Every once in a while, I catch a glimpse of a Team Micah t-shirt or hear from parents of Micah’s friends, sharing a conversation, story or memory of Micah that their son or daughter has shared with them. We also recently learned that there will be a memorial page for Micah in the yearbook this year as this would have been his senior year. These are just a few of the things that people have done that remind us that Micah has not been forgotten.

Before I found myself in the role of bereaved parent, I didn’t know how much it meant for people to share memories and photos of someone who had passed away; to be able to talk about them freely without worrying about making the other person uncomfortable. When someone new in our lives learns of our loss, there is frequently that moment when they don’t quite know what to say. Often, there’s the initial “I’m so sorry” which is followed by an awkward silence before one of us can change the topic to something less uncomfortable than death. As much as I like to talk about Micah and share memories of him, I know that it can sometimes be hard for others to know how to respond.

One of the most memorable interactions I had was with someone who I hadn’t seen since I was pregnant with Annika and who didn’t know our story. As we were chatting, she asked what should have been an innocent question, “How old are your children?” It was easy to share about Annika, telling her age and how she was now in college. However, when it came time to tell about Micah, I felt uneasy as I began to share that he had died from cancer at the age of fifteen. Instead of the expected response, however, she asked me to share one of my favorite memories of him. That simple request gave me the freedom to share a fun memory of him, turning what could have been an uncomfortable moment into a time of sharing and reminiscing. I was so grateful for that opportunity and made a mental note to try to remember that for times when I’m in a similar situation with others.

When it comes to being able to talk about Micah and share stories of him, I imagine how difficult this has been for Annika as she transitioned from being home with all of her friends who had been with her through Micah’s illness and death, to starting a new life at college. She has made some great friends at Wartburg but none of them knew Micah and initially, only her roommate knew that she had lost her brother. After all, how do you even start that conversation with someone new, “Oh, by the way, did I tell you my brother died?” By now, most of her college friends now know about Micah’s death and she is able to talk to them about it, but they don’t have memories of him like her high school friends do. Although they never met Micah, they are getting to know what he was like as Annika shares stories about him. One of her friends in particular has become very invested in Micah’s story and wants to know more. She’s always extremely happy when Annika shares memories of Micah and it’s been good for Annika to be able to have someone close to her that she can talk to about him.

Through the loss of Micah, I have learned how important it is to be able to talk about the people in our lives that we have lost along the way. Telling stories of Micah has not only been healing for us but also gives those who have never met him a little glimpse of who he was. I hope that someday we’ll all be able to talk freely about those we have lost; sharing stories of them with others so that they can continue to live on through our memories; so they can be remembered and never forgotten.

Hearts Abound

I was recently given the opportunity to write a reflections piece to be included in the spring newsletter for our local chapter of The Compassionate Friends, an organization that supports families after the loss of a child. In the article, I briefly mentioned the phenomenon of hearts appearing in unexpected places. Over the past year or two, I have noticed hearts showing up in so many ways; a knot hole in our wooden fence, a chunk of mud that our dog tracked in, miscellaneous places in nature, and even in some of Micah’s favorite foods. I’m not sure if I’m just more aware of them now or if they really are showing up more frequently. Either way, I like to think that each heart I see is a message of love from Micah, a sign that he is still with me in some way.

Here are some of the hearts I’ve been seeing lately as well as the message I shared for the reflections piece.

From Death to Life

One of the things I most appreciate about living where I do, is the change of seasons. Each one has something unique to offer and brings with it its own beauty. I love seeing the vibrant fall colors as the leaves transition from brilliant green to hues of red, yellow and orange. Although the color change is indicative of impending death, there is so much serenity and beauty that comes along with it. Even in the winter, when the world lies in a dormant state, a fresh blanket of snow can bring a sense of tranquility to a world that is otherwise, for all intents and purposes, in a state of death. It brings light to the darkness and covers the dirt and grime that infiltrates our lives. After a while, though, even the beauty of the snow grows old and I find myself longing for spring and summer; for a time of warmth and new life.

As we’re transitioning from winter to spring, it makes me think of my grief in terms of seasons and the way I choose to cope with the death of my son, Micah. In the “winter” of my grief, there are times when I find comfort sitting alone in my sorrow; allowing the tears to flow as I scroll through pictures of him while listening to his favorite music, reliving memories from when he was young, up through the final days and moments of his life. I find some sense of comfort and healing as I allow myself to feel the emotions that somehow I think I need to hide from the world. At times like this, I feel like I’m simply looking for ways to survive the loss of my son. 

Although I feel some benefit from allowing myself these moments, I can’t stay in that place of grief and sadness for the long term. I don’t know if I would be able to survive my loss without the belief that Micah has been given new life through his death; trusting that there is life after death. Believing that my son’s spirit is just as alive as it ever was and that he is always with me in my heart, brings me comfort. I feel his presence in the beauty of a sunrise, the appearance of a heart in an unexpected place, the grandeur of an eagle soaring overhead or the sound of one of his favorite songs playing on the radio. It’s as if he’s letting me know he’s near as I allow myself to enjoy the daily beauty that is all around me.

Just as I believe that Micah has received eternal life after his physical death, I also know that I need to find new life, a way to thrive and not just survive, in spite of the emptiness I feel from his absence. Although my son’s untimely death has changed me forever, I can’t let it destroy me. After he died, I kept thinking that there had to be some reason for this, some purpose to fulfill, some specific thing I needed to do to somehow make sense of his death. After pondering this for the past two and a half years, I have come to the conclusion that maybe there isn’t one specific thing that I need to do to honor Micah’s life but rather to live a life that will bring a sense of purpose. Maybe the purpose I was looking for is to simply live my life to the fullest; to share the love that I had for Micah with others, to offer my support to those who are hurting and lonely, and to find something to be grateful for in each and every day that I am given. 

As we anticipate the arrival of spring, a time of new life and growth, my wish is that we all may be able to find the beauty that still exists in this world and to be grateful for the gift of new life, both for our loved ones who have gone before us and for us as bereaved parents, grandparents and siblings. May we all experience a new life where we live with purpose, find ways to share our love, show gratitude for what we have and to be a support for others who are grieving the loss of a loved one. 

The Many Faces of Pediatric Cancer

Before Micah was diagnosed with Rhabdomyosarcoma, I was rather naive when it came to my knowledge of pediatric cancer. I had known some adults who had been diagnosed with cancer who had gone through treatment, gone into remission and survived. I assumed it was something that they dealt with for a short time and then were able to get on with their lives as normal. We have all seen images like these; the person with cancer who still looks “fine”, the hair loss that goes with chemotherapy, family and friends shaving their heads as a way to show their support and solidarity, celebrating the end of treatment by the ringing of the bell, being granted wishes from wish granting organizations, and living life in spite of their cancer diagnosis.

What I didn’t see was the amount of pain and suffering that cancer patients endure behind the scenes; the images we are usually spared. The toll that the cancer and treatment have on the body are often somewhat hidden from the world; the extreme fatigue, the pain of neuropathy that’s a side effect from the chemo, the need for physical and occupational therapy, endless procedures and surgeries, collapsed lungs, colostomies, feeding tubes, breathing support, and sometimes even the loss of life. It’s so much harder to see this side of cancer. Even for those who survive their original diagnosis, most suffer with side effects of the cancer and the treatment for the rest of their lives. The ironic thing is that the treatment used to attempt to cure the primary cancer, increases the risk of being diagnosed with another type of cancer later in life.

As we’re nearing the end of September, the end of Pediatric Cancer Awareness month, I’m reminded again of the changes that need to happen. Currently there are a limited number of chemotherapy drugs approved for pediatric cancer patients. Childhood cancer research is consistently underfunded. Less than 4% of the federal budget for cancer research is dedicated to childhood cancer. Cancer is the leading cause of death by disease in American children, resulting in the death of approximately 1,800 kids each year. Approximately one in five children diagnosed with cancer do not survive. We need to work to raise awareness and fund cancer research to find new, less toxic treatments for these children so they can have the chance to live their lives into adulthood, to be given the opportunity to grow up, have families and enjoy the lives they should have had.

*Most of my statistics came from Alex’s Lemonade Stand Foundation’s website. This is a reputable foundation that funds research, raises awareness and supports families of children who have cancer.

https://www.alexslemonade.org/

Sharing the Love

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Throughout his life, Micah was typically a pretty affectionate kid. Whether he was giving someone a “friendly” pat on the head, sticking up for the underdog, or giving one of his sweet hugs, he found different ways to show he cared. My mom still talks about what a great hugger he was and how she misses his hugs. What I wouldn’t give for another hug from him right now!

From when he was young, until the very end, he was always good for a hug, whether you thought you needed one or not. Even as a teenager, when many kids are embarrassed to just be seen with their parents, he seemed to have no qualms about showing his affection. He’d ride to school with me most days and as we would go our separate ways, with him crossing the parking lot to the middle school and me heading off to the elementary school, he’d usually give me a big hug and even an occasional peck on the cheek as we parted. It didn’t seem to matter to him if others were watching.

It wasn’t always a hug, though. When Micah was young, I’d occasionally find little notes on my pillow or bedside table. Sometimes it was a simple message saying that he hoped I’d had a good day. Other times it was a request to read another chapter of Harry Potter together before heading off to bed. Most often though, it was a short note comprised of just three symbols: a rough drawing of an eye, followed by a heart and the letter “U”, his typical way of writing “I love you”.  I miss the days of finding those notes and treasure the ones that I saved from when he was young.

Sometimes, Micah put his love into action. I have a vivid memory of waking up one night, in what felt like the middle of the night, to find him standing by the side of my bed. I immediately asked him what was wrong and his response was simply, “Come on, Mom, I have to show you something!” Thinking that something must be terribly wrong, I got out of bed and followed him downstairs where he led me to the kitchen. When we arrived, I looked at him and his face was beaming with pride. When I had gone to bed that night, the kitchen had been in disarray, with dirty dishes in the sink and clutter strewn about, which I hate to admit wasn’t a rare thing for me. He told me that he hadn’t been able to fall asleep that night, so while the rest of us were in bed sleeping, he decided to clean the kitchen; washing the dishes, clearing the clutter and even sweeping and mopping the floor. Even though I knew he should have been sleeping, I have to admit how much that meant to me. Seeing the way he was radiating his love for me through his actions melted my heart. It’s a gesture that I will always remember.

Towards the end of his life and after his death, several of Micah’s friends shared stories of things that he had done that had made them feel special. To Micah, they may have seemed like little things but apparently, his actions had been meaningful to them. Whether it was standing up to someone to protect a friend or simply taking the time to ask someone about their summer, his actions had made an impact on them.

It was two years ago today that we celebrated Micah’s short life with family and friends as we said good-bye and buried our sweet boy. As I look back on those days surrounding his death and funeral, I think about the many ways that we were shown love by others as they shared their condolences through hugs, words of comfort, and kind gestures. It reminded me of the ways that Micah showed his love for others. When I think about our world today, it seems like we could all use a little more love. As people are isolated from others due to COVID and the need for social distancing, we may not be able to share as many hugs with others but maybe some little gesture like reaching out with a phone call, letter, or some other small act of kindness is what someone needs to know that they are loved.

 

Wishes

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Micah was quite the trooper when it came to enduring everything he went through during his cancer treatments. He was so patient and polite with the nurses and doctors and rarely complained throughout all of the times when he was poked and prodded in order for labs to be run, to be prepped for chemo and to undergo other routine tests. He knew that’s what he needed to do to fight his cancer, so he did it.

The last week of June, two years ago, he was scheduled for yet another week of daily chemo treatments. He’d made it through the first few days but on Wednesday he confided in me that he was so tired of his chemo treatments and just wanted to be done. My heart was breaking for him as I knew his treatments were scheduled to continue until October. I remember going through his chemo schedule with him, trying to break it down into smaller chunks: only four more Monday chemo treatments, three more overnight stays, and two more weeks of daily chemo treatments. I was hopeful that looking at it that way might make it a little easier to swallow as opposed to knowing that he still had over three months of chemo remaining.

Ironically, the very next day we were told that, despite all of the chemo and radiation he had received, his cancer had spread, invading other organs and areas in his abdominal cavity. The oncology team recommended that he finish his next two days of chemo for this five day cycle but after that, he would need a break to let his body heal and prepare for the possibility of a last resort surgery. Even after his surgery at Rochester a few weeks later, the team talked about the possibility of a new type of chemo they would like to try with him that would hopefully give him the chance to enjoy one final summer. Even that didn’t come to fruition as his body never recovered enough from his surgery to make that possible. Micah’s wish for the end of chemo was granted, but not in the way that any of us wanted.

Sometimes I think about life and the things we wish were different. Wishing for something we don’t have or wishing for the end of something that isn’t working for us. We think we know what’s best for us and what would make our lives better. Sometimes, though, the granting of our wishes backfires, leaving us with a wish come true but in another situation that is less than desirable. Micah’s wish for the end of chemo was granted; however, I know he wanted more of this life before leaving for the next. He had plans for his life, things he wanted to do before he died.

Today I read a post on Facebook that struck me. It said, “Whether I live or whether I die, I am the Lord’s. Ultimately, it’s all good.” With the assumption that there is life after death, and I have to believe there is, Micah is enjoying a good life, actually a life that is better than “good”. Although I wish he were still here, living life with us, I take some comfort in believing that he is living the best life possible now. A life where there is no pain, no sorrow, no cancer and certainly no need for chemo.

 

 

 

Broken Dreams

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When you lose someone you love, you not only lose that person but also any hopes and dreams you had for the future with them.

Every time we get a piece of mail from another college encouraging Micah to come and check out their school, it’s a bitter reminder that he’ll never get to experience college life or choose a career. When I see one of his friends around the community, working at their job, playing in the band, or having fun with friends, I’m reminded of all that he missed out on with them. I love seeing his friends as it reminds me of times they spent together but it also brings realizations of what Micah will never get to experience.

One day I stumbled across an airline napkin with Annika’s handwriting scrawled across it. As I examined it more closely, I realized that it was a napkin from the last leg of her return flight from her Europe trip, from Iceland to Minneapolis, the trip she was making to say her final good-bye to Micah. She had composed two lists on that napkin, one naming things that Micah would never get to do and the other, the things that she wouldn’t get to do with him. It broke my heart to read those lists.

Things Micah Will Never Get to Do:

  • Drive a car on a real road (not just driving down Grandma’s driveway)
  • Go to prom
  • Graduate from High School
  • Go to College
  • Have his first kiss
  • Fall in love
  • Get married
  • Have Kids
  • Tease Annika about being old

Things Annika Won’t Get to Do with Micah:

  • Teach him how to drive
  • Go on their cousin trip
  • Have their kids grow up together
  • Raise kids together
  • Get to experience their relationship as adults
  • Have him at her wedding
  • Get to tell him how important he is to her

Both lists continued but it’s clear how much Annika’s life will be different without him. She went from having a brother who was pretty much always there, to feeling like an only child. All of the things they had planned for their future have been washed away like a sandcastle being swept away by a wave.

There are so many things in life that we take for granted. We put off things thinking that we will get to them when there’s more time, when we’re older, or when we retire. The trouble with that is sometimes tomorrow never comes. Sometimes life takes us on a different path.

Losing Micah has taught me that we need to live each day to the fullest. We need to live for the moment, enjoying life as it comes, and cherishing the people in our lives because none of us knows what the future holds.

God is Good, All the Time???

“In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

So many times, I have heard people talk of God’s goodness when good things happen; a loved one’s cancer is in remission, prayers for healing are answered, and life in general is going well. If that is true, what does it mean when the opposite happens; when our prayers for healing aren’t answered, when someone we love dies, when we are in the depths of grief and despair? If we give God credit for the good things that happen to us, does that mean that God is to be blamed when things don’t go the way we think they should? When I think of Micah and how cancer destroyed his body, it’s hard for me to comprehend God as being “good” in the way we often think of God’s goodness.

I have heard the saying, “God is good, all the time. All the time, God is good,” so many times throughout my life but I’d never given much thought to what that really meant until just recently. One Sunday, not long after Micah died, I was sitting in church and heard the pastor use that saying in his sermon. As I let those words sink in, I could feel my anger and bitterness growing. If God was good, why did Micah get cancer and suffer? Why did God let Micah die when he was so young? If God was really as good as we say, how could this tragic thing have happened?

As I’ve struggled with these thoughts, I’ve come to realize that this way of thinking isn’t what is meant by that saying. When we hear that God is good all the time, it doesn’t mean that we will only experience blessings in our lives, that we will be spared from any pain or heartache. In fact, in the Bible we are promised that we will have trouble in this life (John 16:33). Being a Christian doesn’t mean that we will have a pain free life but it does mean that God will be with us during those times when the pain is so intense that we wonder how we can go on. Now, when I hear, “God is good all the time”, I try to remind myself that what it really means is that God is with us and is here for us, in any and all circumstances. God is there to celebrate in our joys and victories but God is also with us to support and comfort us when we are experiencing the valleys and low times in our lives.

This past weekend, we celebrated with our niece as she was confirmed. She was very close to Micah and I know that his death has affected her and caused her to question her faith and trust in God. In her faith statement, she so eloquently shared her struggle with faith, doubt and trusting in God through the difficult times in life. I was so moved by her brutal honesty and could relate to so many of the things she shared but her words that struck me the most were the following: “Even when life gets unbearable, and you’re tired of always picking yourself up off the ground, you allow yourself to get closer to God and to take comfort from your relationship. God isn’t there to take away the hurt, God’s there to help you through it.”

In my grief, there have been times when I haven’t been able to feel God’s presence, when I have blamed and felt abandoned by God but I know in my heart that God has been there the whole time. God shows up in the people that have been placed in our lives, in the words and deeds of others, in the little things that bring us comfort. After Micah’s death, a friend of ours told us that God is grieving with us. I had never considered that perspective before but it gave me some comfort and a new way of seeing God’s understanding of what we are experiencing. God sees our pain and knows the heartache of losing a child. Even when we can’t feel it, God is there, ready to provide the comfort and peace for which we are so desperately searching.

One Year

It’s hard to believe that it has been a whole year since Micah was here with us. We survived all of the “firsts” without him but not without a lot of tears and heartache. The past few weeks have been filled with so many reminders of his final weeks and days. I found myself going back and reading the Caring Bridge entries and scrolling through the photos from the last few weeks of his life, reliving his final days.

I think back to the days when my kids were younger, when my worries and fears would take over and I would imagine how I would ever survive if something were to happen to either of them. As a parent, that was always one of my biggest fears. At those times, I imagined that I would never be able to endure something like that, that I wouldn’t be able to function and would lose my will to go on. Of course, I also believed that it would never happen to my family. Those were the things that happened to other people. At least that’s what I thought until it became our reality.

Unlike my fears from the past, I’ve realized that life does go on and we are able to continue to live life after loss. I believe that my grief will always be a part of me but that I will be able to continue to build my life around it. Although Micah is not physically with us, I still feel like he is near at times. He’s with me in my thoughts, my memories and in my dreams, which is probably why I frequently bring him up in conversations. Although I’m sure this might make some people uncomfortable, I can’t stop myself from talking about him. Even though Micah died, that doesn’t take away the fact that he also lived. I have 15 years of memories of him that will always be a part of me and will keep him present in my life.