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.
I woke up this morning with a bittersweet reminder from Facebook of our last outing as a family of four, one year ago today. Not only was this our last family event that we attended together, it was also Micah’s last day out in the world. Just hours after leaving the show, we took him to the Emergency Department at Children’s Hospital in Minneapolis for the last time. Besides leaving the hospital the next day to be transferred to Mayo Clinic & Hospitals in Rochester, he would never again leave the hospital before he passed away just a few short weeks later.
This was supposed to have been the beginning of a week long family vacation at the cabin where we would spend time together before Micah’s big surgery that was his last hope for a possible cure. We had our bags packed and were ready to head to the Cities for a day with family, a trip to the Guthrie Theater for West Side Story and then off to the cabin the next day after spending the night with family in town.
When I went to wake Micah that morning, I could tell that he wasn’t feeling well. After going into his room a couple of times to encourage him to get out of bed, he asked me if I could snuggle with him for a little bit before he got up. Even though we were already running behind schedule, I couldn’t say no to his request. As the mother of a 15 year old boy, I knew that this was a rare occurrence and I’m so glad I took that opportunity. If you had told me then that I would never again snuggle with my son in our home or that this would be the last time he would sleep in his own bed, I wouldn’t have believed it. I didn’t know then how drastically our lives were going to be changing in such a short amount of time. I never would have believed that cancer would destroy his body so quickly along with his chance of returning home for even one last day.
The crazy thing about “lasts” is that you rarely know that it will be your “last time” until it’s over, until the next time never comes. As I look back to that last “good day” that Micah had, I’m so grateful that I took the time to snuggle with him. I can’t tell you how many times I have looked back at that day and wondered how much regret I would have felt if I had missed that opportunity; if I had let our schedule, rather than my heart, dictate my decision that morning.
I sometimes wonder if I would have done things differently if I’d known that Micah’s life would be cut so short. Would I have tried to make each moment a little more special? Would I have snuggled a little longer, taken more videos and pictures, or spent my time differently had I known that he would be cheated out of so much of his life? I have feelings of regret when I think back to time that feels like it was wasted but I am also so grateful for those moments that I treasure; when we took the extra time and effort to make memories and saying “yes” to the little things to which I could have so easily said, “Not now, maybe later.”
Losing Micah has opened my eyes to the need to live life to the fullest, to take time to spend with those we love and to prioritize people over things because, unfortunately, we rarely know when it will be our last chance to give our loved ones a hug or kiss, say our last “I love you” or say our final “goodbye” until it’s too late.
Our family of three recently had the opportunity to see the musical Dear Evan Hansen. As we watched the story unfold, I found myself connecting with the family in the musical whose son and brother had just died from suicide. As I watched them trying to figure out how to deal with his death and how to handle their emotions, I felt like that could have been our family up on the stage. Although the circumstances of Micah’s death were different than the character in the musical, I found myself drawing a parallel to this family of father, mother, and daughter.
Everyone seems to deal with loss in their own way but one common thread that I observed in the musical was the need for connection. The mother was soaking up the memories told through Evan Hansen’s stories and emails of his alleged friendship with her son, Connor. Even though they were all lies, and the other family members initially questioned them, she needed to believe that they were real. Her belief that her troubled son had made connections and experienced a true friendship was what she needed to help her through her immediate grief. Those stories and emails appeared to bring her some comfort along with new “memories” of her son.
After Micah died, I worried that I would start to forget little things about him as life went on without him. Would I remember the sound of his voice, his mannerisims, the little things he would say or do that would make me smile? Would my memories of him fade away? Would other people start to forget about him? As I listened to the words of the song “Disappear” from Dear Evan Hansen, I had a difficult time trying to control the tears that were streaming down my face. The words that hit me are still running through my head:
No one deserves to be forgotten No one deserves to fade away No one should come and go And have no one know he was ever even here No one deserves to disappear To disappear Disappear
We have some pictures and videos of Micah from the 15 years of his life that help to keep his memory alive but I have also realized that there are so many reminders of him all around me. Those memories are not only triggered by photos, but also specific dates, places, and tangible items. Every time I eat watermelon or blueberries or see someone drinking Mt. Dew, I think of Micah as he loved all of those things. As I think back to Father’s Day weekend last year, I’m reminded of my last canoe ride with him on Sugar Lake. We went to the area where the stream enters the lake and got out to explore a little, one of his favorite destinations on the lake. At that time, we thought he was doing well so I never would have guessed that would be our last canoe ride together. Everywhere I go, I see things that bring back specific memories of him and the things he did.
In spite of the many memories of Micah that I have, I am also painfully aware that there will never be an opportunity for me to create new memories with him. I find myself thinking of Connor’s mother from the musical and how she needed to hear the stories that Evan told her about her son. I realize that, like her, I also want to hear other people’s stories and memories of Micah as that is the only way I will be able to have “new” memories of him. I know that many people are unsure of whether or not they should talk to grieving people about their loved ones who have died. Do you risk sharing a memory that will likely bring tears or do you just keep things to yourself to avoid an uncomfortable situation? I can’t speak for everyone, but I know that I would much rather have people share stories of Micah, even if hearing them makes me cry, as opposed to missing out on learning something new about him that I otherwise would never have known. When other people share memories of Micah, it gives me comfort and gives me a little insite into who he was with other people.
Since Micah’s death, I have wanted to do something in his honor that will keep his memory alive for others. Something that will benefit other people in one way or another. In Dear Evan Hansen, students from his school started what became know as the “Connor Project” as a way to honor his memory and work to prevent others from feeling like they were alone and without hope. Although I don’t have a specific plan yet, I would love to find a way to create something good from our loss. Some way to keep him from being forgotten, to keep his memory from fading away, to prevent him from disappearing.
** If any of you who are reading this blog post have any memories, stories, or pictures of Micah, I would love to hear or see them. Also, if you have ideas of things that could be done in his memory to benefit others, I would love to hear those ideas, too.
This picture of Micah was taken two years ago, before he was sick, while he was just your typical, carefree teenager. As he and I were leaving school that warm spring day, it began to downpour. I was in favor of waiting it out in the shelter of the school but not Micah. He encouraged me saying, “Come on Mom, it’ll be fun!” So we took off our shoes and ran through the pouring rain, splashing through the deep water to get to our car. We were soaked by the time we got there but I had to take this picture of him to show the depth of the water in the parking lot. I tend to be the type of person who typically plays it safe but I’m so glad Micah encouraged me to take a chance and play in the rain that day. Now I have this fun memory to look back on every time it rains.
Just a few days ago, it was raining when I was leaving school. As I was walking to my car, my mind immediately took me back to that day when this picture was taken. I smiled as I walked to my car, thinking of the fun we had that day. Once I was in the car though, my smile gave way to tears as the pain of losing Micah surfaced once again. There isn’t a day that goes by that I don’t think about Micah or see something that reminds me of him but lately, it seems like there have been so many little things that have been flooding my mind with memories of him. When they say that grief comes in waves, I believe it and I feel like a huge one has just caught me off guard and knocked me off my feet.
I’m not sure why my grief has intensified in the past few days but as I think about it, many possible reasons come to mind. Whether it’s the upcoming Easter holiday, preparing for Annika to graduate and head off on her own adventures leaving us to be empty nesters prematurely, or the fact that Micah has now been gone over 8 months, basically the same amount of time from when he started experiencing his symptoms until we lost him, it doesn’t really matter. The fact is, he’s gone. He won’t be coming back. However, the many reminders that I have of him not only bring tears of grief but also bring back beautiful memories of time spent with him.
When I was at church tonight for the Easter Vigil, something in the pastor’s sermon struck me. He talked about how the Ressurection took away death’s power to steal our joy. Death in and of itself will certainly take away our joy and fill our lives with pain but with God’s promise and hope of eternal life, we can find joy again, knowing that one day we will all be reunited. It’s that hope that helps to ease our pain a little and gives us the strength to go on without our loved ones by our side, believing that someday, we will once again be together for eternity.
Today would have been Micah’s 16th birthday. He should be eating birthday cake, opening gifts, and thinking about getting his driver’s license. We should be celebrating a milestone birthday with him but instead, we’re planning how to honor his memory on his birthday; looking for ways to help us deal with the fact that he’s not here.
When we were celebrating his birthday last year, we never imagined that it would be his last. Even though he was in the throws of chemo treatments, we thought it was just a hurdle that we needed to jump in order to cure his cancer. We believed there would be more birthdays and more milestones to be celebrated.
Despite what was going on in his life, Micah had a pretty decent birthday last year. That was one of the few weeks that he actually felt well enough to attend school which was a good thing because, on his birthday, many staff and students showed up wearing their ‘Team Micah’ shirts. I still remember how touched he was by that gesture. Although Micah was never the kind of person that wanted to be the center of attention, he was basking in the glow of the love and support that he felt that day.
Today we will be remembering Micah and shedding some tears as we reminisce about birthdays in the past and grieve not only the loss of him but the loss of the hopes and dreams we had for his future. We’ll share some of our favorite memories of him, holding on to the things that made him special to us. But, along with the tears, I’m hoping we’ll have some moments of joy and laughter as we think of him too. His sense of humor and loving spirit will never be forgotten. Amidst the tears and laughter that this day will bring, I’m also guessing there will be a little Mt. Dew sprinkled in. Micah would have wanted it that way.
When Micah was sick and receiving chemo, the medical staff offered him a wide variety of options to try to help with his nausea, including essential oils. He usually declined, however, in the last week or two of his life, they tried lavender and, for a short period of time, he just couldn’t get enough of it. We would put some on a washcloth and he would hold it right by his nose and breathe in deeply. For some reason, that seemed to help him in his final days. At one point, when he had a high fever, they even added it to a basin of cool water so when we put cool washcloths on him, the scent would be there too. I began to love the smell of lavender because it reminded me of Micah.
A little over a month after Micah died, I was shopping with my cousin in a cute little shop when I saw this bar of lavender soap. My mind immediately went to Micah and the memories of his time in the hospital. I bought it on the spot, knowing it would be a little reminder of him. Every time I used it, the scent took me back to Micah and his last days and actually, in a strange way, provided a little comfort.
One day, after being gone all day for a college visit with Annika, we came home and this is what I saw on the bar of soap. I clearly saw a heart, which I like to think was a sign from Micah. I know that not everyone believes in “signs” but to me, it was a sign of Micah’s love for us. A sign that he was ok. That he was still with us in spirit. Love knows no boundaries.
“If love could have saved you, you would have lived forever.”
Love is a powerful thing. It makes you want to do everything in your power to protect your loved ones from harm. It gives you the endurance to stay up all night with a sick child. It gives you patience and strength to meet the needs of those you love when they are sick or in pain. It gives you hope to keep on fighting even when things look bleak.
Unfortunately, love cannot heal all wounds. It cannot cure cancer. It cannot stop death. But death also cannot stop love, for love perseveres. Even when someone you love is being destroyed from the inside out, love endures. Love can live on in your heart even when the one you love is no longer here because love has the power to last forever.
Saying goodbye is never easy, especially when you’re saying it to someone you love for the very last time. Because Micah’s health deteriorated so quickly at the end, he didn’t get the chance to tell many people goodbye. Instead of having months to say his final farewells to family and friends, Micah ended up only having days and even then, I don’t know if he realized how little time he really had.
By the time we were able to tell Micah that there wasn’t anything else the doctors could do to treat his cancer and that he wasn’t going to get better, he only had a couple of “good” days left. Once Micah realized that his time was limited, one of the first things he wanted was to see his sister, Annika. Knowing that she was on her Europe trip, he asked how long she had been there and when she was supposed to return. Because he really wanted to see her but felt bad about her needing to come home early from her trip, he graciously said, “I’ll give her three more days and then she needs to come home.” It was almost like he knew how much time he had left because by the third day, it was really his last decent day. Luckily, she was home within two days and they were able to spend a little quality time together.
At one point, Micah told me that he wanted to see his friends. Unfortunately he didn’t get that chance because by the time it would have been possible, he was in so much pain and the pain meds that he was on made him so confused and tired that he spent most of his time sleeping and he wasn’t up for visitors. I know that Micah cherished his friends and would have loved to be able to see them one more time and tell them goodbye. Micah was blessed with great friends and I know he was so grateful for them.
Sometimes I feel like Micah was robbed of the opportunity to say many goodbyes but at least we were able to be with him during his final days and moments. When I think of people who lose loved ones unexpectedly and don’t get the opportunity for that last farewell, I feel so grateful for the little time we were given.
As we say goodbye to 2018 and welcome a new year, it is with mixed feelings. Although last year was a difficult one for our family filled with hospital stays and trips for treatment, we were blessed with time with Micah. I’ll never feel like I had enough time with him but I will forever be grateful for the 15 years that we did have. We’re hoping for a better year in 2019 filled with hope, healing and many good memories of our time with Micah.
HOPE Be strong and take heart, all you who hope in the Lord. Psalm 31:24
Hope is an interesting thing. When you have it, it gives you the strength to go on, something to look forward to. When it’s gone, you can’t see beyond today. From that very first day, before Micah was even offically diagnosed with cancer, most of the medical staff that he encountered would ask him about his future plans. In addition to general questions about himself, they almost always asked him what he wanted to be “when he grew up”. I realized that, in asking this question, they were likely trying to plant the seed of hope in Micah. If he could envision a future for himself, maybe it would give him what he needed to fight and “win” his battle with cancer.
Although Micah’s response would fluctuate from time to time, his answer to this question would usually indicate his desire to be a math teacher. He always enjoyed math and felt that it was a strength of his. It also meant he would be able to have a job that would allow him to have his summers off so he could spend more time at the family cabin, which was his main priority. Whatever his answer was; math teacher, electrician, or engineer, he always had an answer to the question, until the day he found out that his cancer had spread. The next time he was asked that question, his response broke my heart and made me realize that he was losing hope. When he responded with, “I don’t know, that’s too far away to think about”, I knew he was wondering if he would ever get to that point.
After reading about the type of cancer that Micah had, even after being warned by several staff not to Google it, we knew the odds were against him, especially since his cancer was stage IV. In spite of this, we really thought that he would beat it and eventually be okay. By the end, though, things kept going from bad to worse. Any glimmer of hope that we had, would be drowned out with more bad news. By the last week, we knew that there was no hope of a cure. When people would say that they were still praying for a miracle, I knew in my heart that miracle wasn’t going to happen. Our hope in healing for him had been crushed.
Now, we have turned to a different kind of hope, the hope we have in our faith. The hope of eternal life in heaven. We believe that Micah is in the presence of God, celebrating his first Christmas in heaven with friends and family who have gone on before him. We received a gift from one of Micah’s friends today. It was a poem called I’m Spending Christmas with Jesus Christ this Year and it’s a beautiful vision of what we hope Micah is experiencing. We pray that you are able to hang on to hope in whatever circumstances you are experiencing.
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.
Grieving Mama 