Finding A Tribe

I heard a story recently about a toddler girl that was insisting on “helping” her parents bring in the groceries, particularly the gallon of milk. The milk was obviously way too heavy, but she stubbornly insisted that she could do it all by herself. Wanting to avoid the disaster of spilled milk, her mom picked her up and carried her into the house while the toddler “held” the jug. When she got to the kitchen, she glowingly bragged to her dad that she did it, all by herself! This story spoke to me, on so many levels. Not only do I have a few stubborn toddlers myself, but it got me thinking about how much I have been carried over the past few years by a tribe of people that have mostly gone unseen. I could not have made it through without my tribe.
I have always been someone that wants to do it on my own. I have always almost preferred living life in solitude with my family.

I remember the day so clearly when that all changed. We had received the call from Hayes’ doctor with an official diagnosis. We had just been told that he had Choroid Plexus Carcinoma, over the phone. We immediately began researching and any hope that we had previously felt was shattered. Google revealed that not only was our babies cancer incredibly rare, but it was also extremely aggressive. Numbers and statistics flashed on the search engines in front of us and I was scared to death. The scariest revelation was realizing that there was no support group in Utah for parents of kids with Choroid Plexus Carcinoma. I had reached out to other brain tumor moms and I couldn’t find one person that had ever even heard of it. Prognosis was not looking good. I had no idea what to do. Hope was plummeting.

I remember the vivid idea of typing into the search engine of Facebook the hashtag for (#)Choroid Plexus Carcinoma. I hit enter and all of a sudden, an account popped up with several posts revealing the exact hashtag I was so desperate to see. There in the results was a picture of a beautiful blonde 7 year old girl. Her mom had just posted about celebrating 3 years straight of being cancer free from Choroid Plexus Carcinoma. Remember how I mentioned that I like to live in solitude…that I am naturally an introvert? That immediately went out the window and I began messaging this little girls mom, reaching out to a complete stranger in desperation because I was willing to do anything and everything to find out what I needed to do for my baby. I hurriedly typed in fervor, “My baby was just diagnosed with Choroid Plexus Carcinoma. Please give me advice. I am so scared and don’t know what to do.”

Within a minute, this stranger became family. She responded with love and assurance. She said in response, “First off, I am so sorry! Secondly, I want you to know that your baby is stronger than you realize. You can do this. Your baby can do this and one day you will look back on this and be blown away by your own strength!”

This was a game changer. I felt empowered. She gave me no technical advice, no statistical facts, no treatment suggestions, but she simply gave me words that changed me in that moment. I realized at that time that I could do it. I realized that my baby was more than a statistic and no one knew my baby more than me. I knew he was strong and there was no way I was going to look at numbers and prognosis statistics and become discouraged because my baby was bigger than that! I will never forget those simple words from a stranger across the country. In that moment she became a part of my tribe. She shared hope and I grabbed it and refused to let it go! Even if this mom wasn’t physically there for me, I felt lifted up!

“Be around the light bringers,
The magic makers,
The world shifters,
The game shakers.
They challenge you,
break you open,
Uplift and expand you.
They don’t let you play small
With your life.
These heartbeats are your people,
These people are Your Tribe.”

That is what a tribe is for! That is what so many of you are to me…my tribe. I have never met you, but from your corner of the world, you lift me up and give me strength. I believe in myself and you let me. Whether it is a kind comment on a post, an order of a shirt on the HayesTough website, recognizing the necessary fight for childhood cancer, all of these make a difference!  During Hayes’ treatment, I hung a huge world map up in our mudroom and put a pin in the location of everyone supporting us from around the world… I wanted my kids to see that they were not alone.  We had an army.  That is the beauty of kindness and people supporting one another. Social Media can be a dark and negative place, but when people support one another, it is powerful. When you lift each other up, there is nothing you can’t accomplish! Find your tribe and love them hard. You and I are changing the world. #hayesarmy

9 thoughts on “Finding A Tribe

  1. Jennifer Bobrowski

    For being a self proclaimed introvert God is using you in a BIG way! Your words are so powerful you probably can’t even conceive of the impact you have on people. Your beautiful Hayes must be so proud! My child is fighting Hodgkin’s Lymphoma currently but is a young adult much harder to find the support as she is not a child anymore. Someday I hope to help others in the same situation who were just becoming self sufficient but then find themselves in a battle for their life I can only hope to impact someone’s life in the way you have done for so many. What an inspiration you are!

  2. rachelnorcal

    That world map & pins is an impressive visual!!
    And love the pic of you & Hayes surrounded by the army’s uniforms xoxoxo!!
    I am SO glad that you reached out in the very beginning.. πŸ’šπŸ’šπŸ’š It’s an honor to be included in your journey and it helps us to know we’ve been able to help you, even in small ways.

  3. Christina " Leslie " Edwards

    Sending my love and support from North Carolina πŸ’šπŸ’šπŸ’šπŸ’š my daughter and I read your blog together and look at your Instagram!! We pray for y’all every night!!

  4. Mirsi

    I don’t even know how to start to tell you how much I admire you for courage that you found in yourself after such loss in a mission to help others…as a mother of 2 kids I cry with every word you write..your story pushes me foward when I think I’m having a bad day..your family inspires me to be a better person to my loveones..your story stays with me everyday and keeps reminding me not to take anything in life for granted..thank youπŸ’š
    P.s. now you have part of your tribe in CroatiaπŸ’š

  5. I found your husband Steve’s instagram account some time last year, and was blown away by your story! I follow both of you now and am always so drawn in to your posts, and even though they often leave me in tears I read every one, and now your blog! You both really have a way with words! I am excited to read the book when it comes out.

    Without even knowing it, you have been such an encouragement to me! My husband and I have been trying to start a family for a little over a year now and have experienced two miscarriages so far… Our second was in April and we lost our son right around 14 weeks. His name was Forrest Wayne Maclellan. It has been heart breaking and I still have days where I feel so depressed over it, but I have read all of your posts and thought if you and your family can get through losing Hayes and still manage to have such a positive impact on the world, then surely I can too! I know it has not been easy, and I can’t even imagine the pain that you have been through… But you have done it with such grace and I am so inspired by you, even in the midst of your suffering and trials you have been through. I just wanted to tell you that! When I think about my little boy I picture him running around with Hayes. <3

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