Avoiding the Scary Stories

I remember this one particular evening during treatment. I went to the Ronald McDonald Room, a large room on the 3rd floor of Primary Children’s Hospital where food is donated by organizations and restaurants for parents of sick children. Hayes had gone to bed and dinner was being served. I made my way down there so that I could have something besides cafeteria food. You walk into this place and no one is smiling…it is SO depressing. But I was desperate for some non-hospital food so I got my dinner plate and made my way to a long table with 3 other parents sullenly sitting in silence.img_3743
I can’t stand awkwardness so I immediately acknowledged the three people by asking each of them about their sick children. The first two were both RSV parents. Their children were on oxygen and the parents looked like they hadn’t slept in days. They looked scared and I felt for them. Then the third person said her son had cancer. I immediately gravitated to her for obvious reasons. We were both the parents of cancer warriors and I saw her eyes light up in recognition as well when I said my son had cancer too. She told me that her son was battling leukemia. Feeling immediately connected I told her that my son had a brain tumor.

I kid you not, she backed away from me. Leaned back and said, “Oh, that is bad. I couldn’t do a brain tumor! The treatments are so much more intense! So glad my son has leukemia.” It was one of the most isolating experiences of my life. I wasn’t even fitting in with other cancer parents anymore. It killed me. I felt incredibly alone.

Take that one step farther and imagine what happens when you lose a child. You are avoided even by some other brain tumor parents, as if you are the worst karma one can face! It is really hard. So I am now a part of the dreaded child loss group and frankly, I have to speak up because Hayes’ story deserves to be told. I sound like a broken record, but really, my story isn’t going to make anyone else’s situation worse. It is scary to imagine the “what ifs” but if you live your life scared of the what if’s, you lose out on memories with the ones you love!

I was reading a blog post by a fellow cancer mom the other day. She is in the throes of her daughters leukemia treatment right now. She was explaining in frustration that she doesn’t ever want people to tell her their “failure” stories. In fact, she said it was rude of people to try to relate with her if they had lost their child. She only wants to hear about success stories where the child is now 30 years old with cancer clear in the rear view mirror. I read this and honestly, my heart dropped. It literally brought me to tears.

To be honest, I get it. Part of me didn’t want to hear anything but the positive during Hayes’ cancer journey either. I worried that if I even acknowledged that bad things have happened that it could possibly happen to us. So I avoided it at all costs, pretending that no kids ever die from this disease.

But now that I have experienced it first hand, it breaks my heart for any mom that has lost a child. Whether through cancer or anything at all for that matter. Having a child with cancer is extremely isolating but losing a child is absolute plague status to the world. No one wants anything to do with your story because it makes them uncomfortable. So you feel this need to keep your mouth shut and not let the awkwardness out into the world.

Here is the thing, scary and bad things happen in the world, but incredibly beautiful things happen also. Hayes is one of those beautiful things! Even though he is an angel, the fact that he was here at all and that he is my angel is a beautiful thing! I will continue to say his name. And now, every time I meet someone that has their own experience with child loss, I will ask them their child’s story. I will ask them to tell me their child’s name! Their children are still beautiful too. No matter the outcomes of our fights, all of our voices are worth listening too!

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16 thoughts on “Avoiding the Scary Stories

  1. Thank you Savannah for always just “saying it.” Expressing your thoughts so well!
    I try so hard to stay in touch with these moms- they need the friendship more than ever.
    but I admit- I have been the mom that hears a kiddo has leukemia and I think- wow, that’s a longer road but a bit easier knowing the survival rates!
    It’s all hard. No matter what. We’re told to enjoy every little moment but we do live in fear, in sorrow, every little moment too.

    • Yes! I totally get it my friend! I think sometimes all cancer is lumped together and it is hard to relate to each other because our roads are so vastly different! Sending you love!

    • Kellie

      Oh my goodness, as someone who is beyond terrified of childhood cancer, this was good to read. Needed perspective.
      We lost my niece this last December, and although not to cancer, child loss now seems to be all around me, and now that it has touched my life, I understand how important it is to tell their short beautiful stories. Like I didn’t see them before Olivia died. The world needs more of their stories, not less! I’m grateful she lived, and taught me to love so deeply my own children no matter the struggle we face.
      Your strength is so admirable, as is the strength of all mothers of loss. My heart is forever receptive now, and touched in a way that only babies like Hayes and Olivia can do.
      I hope there is something bright for you in ever day. I think of you and Hayes often 💚

      • Thank you Kellie! I think it is such a natural reaction! I totally relate, but having an open forum to discuss their stories and even our fears I think is so important! Thank you for sharing about Olivia! So sorry for your families loss! Sending love!

  2. Mrs. H

    Oh how sad it is that I enjoy reading your posts through endless streams of tears. They speak so true to me. I have a lot of insensitive and invasive questions about the triplets by complete strangers. However conversations run short when I mention the loss of our Emma a couple of years before having the triplets. My heart broke for you reading about the reaction of the other mum. But sometimes people’s perspective is just out of whack. I have a friend with a severely disabled child who requires 24h professional care. When she saw me when I returned to work she told me literally that she didn’t know how I managed. I think it’s one of the few times I have been left speechless in my life. Xxx keep writing for all of us that are unable to word things as beautifully as you do. Three years have passed and I still cry inconsolably when I talk about her.

  3. Kerry Peck

    This is so true. Thanks, Savannah, for voicing the truth of it. Of course, having been on both sides of “scary stories” I remember not wanting to hear any stories about children dying from cancer. Somehow it seemed a betrayal of faith to even think the thought. But now, having been from diagnosis to cancer free and back to re-diagnosis and death of a child, it still surprises me how shunned we can be. Which is unfortunate, because only now do I realize the depth of understanding and experience those who have been through it all have. Keep sharing Hayes’ story and sharing the incredible experience you have. It helps all of us. Thank you!

  4. Well, first I hope you don’t still feel isolated, you are such a beautiful person, and I enjoy reading your experiences you had, since I wasn’t around during your journey. Keep voicing Hayes name and keep he fight going. I am guilty of being one of those people, but I think all people are probably like I was, UNLESS it touches you directly, people just don’t think of pediatric cancer, they don’t want to think that kids die. Which is why we can all spread the word over and over and over, but people won’t stop and pay attention until it strikes their family. sad but true. We as the small group we are, parents, grandparents with kids with cancer, have to stick together no matter what kind of cancer our kids get. Take care, keep your blog up and running. Tracie from Texas. Grandmother to 3yo with leukemia.

  5. April

    You always say what’s been on my mind. The isolation was such a huge, unexpected part of this journey for us. The hardest part is when my child asks where his friends went & why they never get together anymore. I have no answers for him because I have the same question. I think you can never go wrong with empathy & treating others the way you would want to be treated if the situation was reversed. Although I must admit that sometimes it’s me isolating myself because I know most people can’t relate. I heard that someone called me drama at one point.Maybe it was the constant crying in the beginning or not wanting to engage in frivolous conversations that were no longer revelant because you’ve just seen so many children battling cancer. But hell if having a child with cancer isn’t drama then I don’t know what is! Now, we try to still smile everyday & especially at clinic to recognize those fighting hard battles. We try to engage in conversation & show them that people do care. Keep talking Savanna. Keep telling Hayes’s story & especially if it makes people uncomfortable. That’s the only way we can all learn together, bring more awareness, caring & funding. You’re incredible!💚

  6. Santana Grace Dalton

    Thank you for sharing Hayes. I’m sure he was a blessing on Earth and is most certainly one in Heaven. From one cancer angel parent to another, you are a warrior, momma.

  7. Thank you so sharing your story. We lost our daughter to SMA Type 1 18 months ago and so many of our friends have abandoned us. I feel really isolated and I am tired of being pitied because of my loss. My child was so much more than her condition and she lived her short life to the full despite her disabilities. In the last 18 months we have barely met up with anyone because it’s easier for them to ignore us. It’s so lovely to know there are other parents out there who know how this feels.

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