Rochester Local

Following a Mother’s Story of her Dying Son Changed Me for Good

mother holding sick sonNote: Please be aware as you are reading this publication that it was written at the beginning of September 2019. Some of the time references are no longer valid but the emotion and messages remain completely accurate. If you would like more information on Lincoln and his family or wish to support their cause as they keep his memory alive, please visit their Facebook page ‘Live Like Lincoln.’ And may we all live like Lincoln.


I have cried more this week than I have in a long time. And I don’t mean pretty tears; I mean full-out red face, raccoon-eyes bawling… and it was for a family I have never met. I recently started following the story of 5 year-old Lincoln – the Neuroblastoma Warrior. I didn’t know him or his family personally. A friend of mine shared his story on her Facebook news feed. He lived in a small town near where she grew up. I was immediately touched by his story. I couldn’t help but get drawn into their world.

Lincoln was diagnosed with neuroblastoma (a cancer of immature nerve cells) in September of 2017. Over the past 2 weeks, he took a turn for the worse. I followed as his mother, Kaitlyn, posted frequent updates. With every new post, I realized something I had never considered before: each update was a perfect picture of the many, unimaginable struggles they had endured.  I grieved with them. I found myself all too easily putting on Kaitlyn’s shoes. I sobbed as they went on their last vacation as a family of four, as they put up their Christmas tree early for a Christmas in September, and as Lincoln went hunting with his dad for the first–and last–time. When he was nearing the end, her posts became cries for prayers. She would ask for prayers for his rattled breathing, prayers for relief of his headaches, vomiting, or excruciating pain. Finally, a high fever set in and he went into a comatose state. Kaitlyn showed us pictures of her and her husband snuggling with their sweet little boy as he faded off to heaven.

I checked Facebook early that morning to find that Lincoln had passed away and wept as I told my husband the news. Kaitlyn showed us Lincoln’s “forever clothes” and I cried some more. But I really lost it when she posted a picture of her opening a box with a beautiful dress that had come in the mail that day – a dress that Lincoln had picked out for her to wear to his celebration of life. Even as I sit here typing this nearly a week later, I get teary-eyed. I know there are lots of kids out there suffering with cancer. I know this is not the first family to have gone through such a heart-wrenching experience, but this is the first time I have come to see it so closely. This experience was surreal and has changed my view on a few things:

  • Death is not the worst thing – My greatest fear in life is losing one of my sons. But as I began to carry the burdens of this precious family, I realized that death is not the worst thing that can happen to one of my sons – suffering is. When I first started following their story, I prayed for the healing of sweet Lincoln’s body, but as he neared the end my prayers changed. I began to pray for his pain to go away, for a swift and peaceful end. Even when Kaitlyn posted to tell us of Lincoln’s death, she wrote, “Lincoln ran into the arms of his Jesus. We are so happy for him.” She knew too – death was not the worst thing.
  • Face reality with friends – As a general rule, I used to avoid certain types of posts on Facebook. Posts about children dying was definitely one of those I would have purposefully ignored. I have a very vivid imagination that can take me down very dangerous rabbit trails. I see something that happened to someone else and I begin to think up scenarios of how it would happen to me or my family. But this week when I was tempted to turn off Lincoln’s updates because they were too painful, I was hit with the fact that this was reality for Kaitlyn and her family. No matter what she did, she had to face what was in front of her. I know she probably didn’t feel it, but this week I carried the burden with her. I don’t claim to even begin to understand the magnitude of her pain. But for a short time, I understood that this was their reality, and I faced it.
  • We are not meant to battle alone – When it comes to Facebook, there are times I hesitate to post things because something inside me says, “Heather, no one cares.” I’m not sure where this came from but I think it started off as a way to take the emphasis off of me. I was afraid of coming across as self-centered, so I limited the amount of personal stories I posted. I now see that while this may have been with good intentions, it actually stopped me from sharing real things that could have united us. Some experiences, whether they are good or bad, are meant to be shared. Kaitlyn showed me there is strength in numbers. We are not meant to battle alone.

To Kaitlyn: Thank you for sharing your world with us. What a precious gift you have given. You have allowed us to be a part of your family during a season of life that would of been perfectly understandable to save for yourself. Thank you for your raw honesty. You have shown us grace in a time of grief. You have increased my capacity to understand and sympathize. And even though your sweet Lincoln is gone, he is not forgotten. When I hugged my boys this week, I hugged yours as well. Lincoln’s story will change the world. It changed me for good.

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