Moms to See in the 843: Karen Horn, Honesty Through Unbearable Loss

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In June of 2021, my friend Karen experienced a parent’s worst nightmare. Her incredible daughter Insley unexpectedly passed away at the age of nine from an asymptomatic brain tumor, just three days after her diagnosis. In the past two years, I have learned so much from Karen about grief and the loss of a child through her incredibly honest writing. 

To honor Insley and support pediatric brain cancer research, Karen and her husband Wade founded Insley’s Skirts and Shirts and the nonprofit, The Monka Foundation.

I am honored that Karen was open to sharing her heartbreak with Charleston Moms because I think there is so much that all of us can learn about child loss, grief, and Insley’s legacy.

Moms to See in the 843: Karen Horn

I’ve loved getting to know Insley through the pictures and stories you share about her. What do you want people to know about Insley? What do you hope people think of when they think of Insley?

Thank you. I want people to know that she had the sweetest heart. She loved to give compliments to everyone she saw. Insley always said, “You never know when someone is having a bad day, and what if me saying something nice turns their day around and then they do the same for someone else?” I hope when people think of Insley they think of kindness and love. 

I have learned so much from you about grief and navigating this unbearable loss. What have you learned about grief since Insley’s death? Has how you think about grief changed?

I’ve learned that grief is not linear. That grief is love. You never stop grieving your child, you just learn to carry it. Everything about what I thought about grief has changed. I never knew how much grief truly impacts your mind, body, and soul. It has changed me forever. I am not who I used to be. When you are missing a part of yourself, it changes you.

In the past two years, what are the types of things that people have done that have helped you and your family wade through this?

Acknowledged our loss, listened, honored Insley, checked in not only on us but on our son, Rush, and most of all stayed close and walked this journey with us. Child loss can be uncomfortable for a lot of people, but we have a great support system that sits in the uncomfortable a lot and I am so thankful for that.

What’s something you want to scream from the rooftops about losing a child?

It is so unfair. It is the worst kind of loss a human can endure. The book Bearing the Unbearable says it best.

I know it was always Insley’s dream to be a clothing designer and it’s just incredible that even after her death, you continue to find her drawings around the house. Tell us about Insley’s Skirts and Shirts and why you wanted to start it.

The weekend before Insley’s diagnosis and death she had started working on a business plan to start her own company where she would take her art and put it on skirts and shirts. She had the name and some drawings already done. I finished what she had started. I wanted to keep her legacy alive.

Tell us about the Monka Foundation and how what you’ve learned about pediatric brain cancer prompted you to start it.

Insley had an asymptomatic brain tumor. So from diagnosis to death, it was only three days. I just had this thought that I never wanted another parent to feel this. We found out that less than 4% of funding goes to pediatric research and I knew I wanted to help change that number. We also learned that the treatments for pediatric brain cancer have not been updated since the 1950s. Our children, our future deserve more than that. With the funds raised, we hope to be able to give back to pediatric brain cancer research so that our children do have a future. My husband Wade and I knew that we wanted to make a purpose out of Insley’s life, not her death. I 100% feel her purpose was to impact the pediatric brain cancer community.

Are there any resources or social media accounts that have helped you in the past two years?

So many. I’ve connected with other bereaved mothers, grief support communities, and grief professionals.

What’s one thing you should never say to a grieving parent?

I wish people would stop saying “Your child is in a better place.” There is no better place for my child to be than in my arms.

I know that writing is something that brings you closer to Insley. What else brings you comfort?

Being in nature, looking for signs that she sends, watching old videos of her, and hearing stories from other people about the impression she left on them.

Parenting through debilitating grief seems impossible, but you’re doing it with your wonderful little eight-year-old son. In 20 years, what do you hope he remembers about Insley/his childhood/you as parents?

You are very sweet. I think he is pretty incredible too. In 20 years I hope he remembers how much Insley loves him and how protective she was of him. I hope what he remembers about his childhood is the community that has totally enveloped him in love and is doing everything they can to make sure he has support and our friends who have made sure he gets to do all the childhood things he deserves. I hope he remembers that Wade and I were able to live because of him and that everything we did was for him and his sister.

Anything else you’d like to share?

I need to say to anyone that may be going through the grief of a child or will be one day, give yourself grace. This is your journey, grieve how you need to, and please, please talk to someone. 

If you know anyone grieving, don’t try to give them silver linings or timelines. Don’t ask what you can do for them or what they need, because I can promise you they will have no idea. Just do what your heart tells you. Text them to check on their hearts, read books on how to support someone who is grieving, and mostly just love them with no judgment and know that your person will be forever changed but their love for you haven’t. They just might not have the capacity or energy to show it as they once did.

Thank you so much Karen for sharing Insley with the Charleston Moms community. If you would like to support the Monka Foundation and pediatric brain cancer research, you can purchase Insley’s incredibly cute shirt designs at InsSkirsShirts.com. My husband and I both LOVE this one in particular (and get complimented a lot when we wear it!)

Follow The Monka Foundation on Instagram @The_Monka_Foundation for information about upcoming events and fundraisers. Last year’s inaugural fundraising event raised $14,000 for pediatric brain cancer research at MUSC.

Be like Insley. Show kindness every day, live life to the fullest, and spread love so big the whole world will feel it.”


Check out more of our Moms to See in the 843 series by clicking on the image below!