How My Son Turned His Rare Brain Condition Into a Blessing for Others


Have you ever learned that someone is facing a difficult time and you wanted to do something, say something, anything to ease the pain or bring a sliver of comfort? Often times, we truly feel helpless. Wanting to form words into a perfect sentence that will help them immediately feel better, but the only thing that comes out is abject silence, because your mind is suddenly empty of any and all words. However, I have been shown first hand there is so much we can do, no matter how small it seems.

When my son, Luke, was diagnosed with Chiari malformation at age 10, our world flipped upside down. I was consumed and twisted with worry. Worried about his impending brain surgery. Worried about him being scared. Worried about what this meant for his future.

During this time, he was given a knitted prayer shawl made by a precious local ladies fellowship church group. Later, he was also given a prayer bear by a sweet friend of mine. His bear was placed at the upper right corner of his bed and was there for almost two years. His prayer shawl went with us to the hospital and brought so much comfort to him. He told me he could feel the prayers that had been prayed over it and the love that had gone into it. That comfort and peace he got from a small caring gesture spilled over and brought unspeakable comfort to this mommy’s heart through surgery and the months of recovery that followed.

Nearly a year after his surgery, my co-worker was battling cancer. Luke and I wanted to reach out to her, to give her comfort, but I don’t knit. So we decided to send her a prayer bear. Luke picked out the softest one he could find, just the perfect size to hug. We prayed over it, calling her by name and asking that it bring comfort to her as it did Luke.

After that, we decided we could share love and comfort in a very small way through giving prayer bears. To start off, Luke sold some of his toys for donations. Since that first bear, we have given nearly 30 bears in just over a year to others who are sick or hurting, most go to children with Chiari like Luke and other conditions. It has been such an honor to be entrusted by these parents to pray for their precious children! Luke always writes a card to each person, a kind message he feels each one needs to hear.

Luke and his mom holding 4 prayer bears

And the sweet spring beauty that has blossomed from his painful surgical winter has been the most precious to me. Through the bears and prayers, I’ve seen my son’s faith and love flame into a burning compassion for others that has spread into all areas of his life. He is the first to meet and befriend others in new settings. He is kind to everyone and sees everyone as a friend. Whenever we are out, he greets strangers with a smile in passing in the grocery store or running errands and tells them he hopes they are having a great day, holds the door for them or helps them unload their cart.

This has taught me so much about the little opportunities we have each and every day. We can be consumed inwardly with ourselves and our struggles, (something I sometimes do) or we can look outside of ourselves for small opportunities to share a moment of love.

Thank you, my sweet boy, for showing me small things can become big when love is in it!

A version of this post appeared on Families Unbroken.

We want to hear your story. Become a Mighty contributor here.

Editor’s note: This story has been published with permission from the author’s son.

JOIN THE CONVERSATION

Related to Arnold-Chiari Malformation

A young woman with a red umbrella walking through a park in the fall.

When You're Chronically Ill and Trying to Avoid the Comparison Trap

This weekend, my husband and I went to a wedding near his hometown for two of his high school friends. Some of his friends are people I haven’t seen since our own wedding four and a half years ago. My husband’s friends are a group of generally very hard-working, successful people, and I love them [...]
woman looking up at a sunset

Holding Out Hope When the Chronic Illness Journey Is Long

One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected. Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a [...]
woman lying on her back in bed staring at the ceiling

Trying to Live My Life While Awaiting Medical Answers

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, [...]
Woman looking out of window in home, rear view

When Things Need to Be Pushed Back for My Health to Come First

So much of life is about prioritizing. There is limited time in the day, and while I believe it is possible to accomplish a lot, I don’t think a lot can often be accomplished at the same exact time. Sometimes, things have to be set down, often unexpectedly, so other things can be prioritized. But [...]