Grief – Grieving Mama

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 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

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

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.

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.