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Why I Share Tough-to-See DIPG Posts on Facebook

I still remember the moment I started crying and couldn’t stop. It was a November morning. I was perusing Facebook and clicked on a video of little Chad Carr. I had helped at the family’s 5K event the month before and Chad had seemed okay. Watching the video that morning, it was clear that Diffuse Intrinsic Pontine Glioma had taken its toll.

Chad Carr

Christmas came on November 12 for Chad Carr and his family.

His mom, Tammi, was waking him up for Christmas morning. The only thing was, it was early November. But Chad’s family wanted their little boy to have one more Christmas and they knew he wasn’t going to make it to December 25.

I can still remember Tammi’s words, so excited to wake up her little boy, but the part that broke me was Chad’s glee that it was Christmas. The pure joy that remained despite a brain tumor that was robbing him of life. It was that childhood innocence seen in a short video clip that had me sobbing.

I have cried for other children since then. All of these innocent children who have had their lives stolen by a brain tumor with no cure. It is rare, says the medical community. We can’t single out diseases, say politicians.

Those statements may be conceptually true, but they aren’t right once the reality of DIPG is seen because there aren’t many diseases in the developed world absent of hope. Even the worst have a chance of survival. DIPG does not. You are delivered the diagnosis and told you are lucky to have a year to spend with your baby. Then you watch them die.

Put yourself in those shoes and then tell yourself that the rarity of the disease is a legitimate argument to a lack of funding and attention.

That’s what brings me to my purpose in writing this. Katherine the Brave passed away on Monday after a one-year, four-day battle with DIPG. Her family has made it their mission to expose the cruel, vicious reality of the disease. It is what more and more parents are doing as a way to bring attention to DIPG and the need for a viable treatment plan. I say viable because the current “treatment plan” is to send families home to make memories. Those who are “lucky” have what is referred to as a “honeymoon period” — a few months free from symptoms after radiation shrinks the tumor.

I understand the need for awareness. Without awareness and dedication, nothing will change. When I share Facebook posts that show the reality of DIPG, though, I often think about those who will see it. Friends, family, and acquaintances with healthy children and grandchildren who may not want to be exposed to the ugliness of life and death. I get it. You’re talking to someone who refuses to watch animated animal movies because a character always dies.

But it is our responsibility to see it. Just as it is our responsibility to see the war, poverty, abuse, slavery, racism, and sexism running rampant all over the world. We don’t have to take on the burden of all these things — that would ruin us — but we have to see it. Seeing it changes our hearts, minds, and actions, and it can make a difference in the smallest – and biggest – ways.

I do understand, though, that seeing it makes us vulnerable to the reality that we are not separate from it. It could be any one of our children receiving a horrible diagnosis and we know that. Even if our conscious mind doesn’t allow it, our subconscious mind understands, resulting in paralyzing fear.

I believe it’s why we try to “fix it” for grieving parents. We want to believe that if the same thing happened to us we would somehow “get over it” and live a happy life. We want to quiet the terror in our hearts that a random act of horrible luck could result in our worlds being turned upside down and irreversibly damaged.

Unfortunately, there is no fixing a grieving parent. There is no “making it better.” There is only support, love, kindness, and care. Seeing images of Katherine the Brave’s final days in her earthly body and her parents sobbing with grief is heart wrenching. I do want to fix it. I want to help. I want to do something. I suppose it’s why I’m writing.

Even if we found a cure for DIPG directly from Katie’s donated brain, though, it would not “fix” her parents or family. It would not alleviate their pain or take away their grief. It’s the same for all of these families fighting for a cure. They do it to carry on the legacy of their children, to keep busy, to hold on to a purpose, and to ensure other families never experience the anguish they have experienced … but it won’t change their pain.

Each day when I spend time with my three children, I think about the mortality of our family. I think about the possibility that something could happen to any one of us at any time. I would be lying if I said it didn’t scare me. I would be lying if I said I didn’t try to push those thoughts out of my head. But I would also be lying if I said it didn’t make me appreciate life more.

Yes, I still find myself barking orders at my kids and saying things like, “Are you insane? Stop spinning/touching that/falling!” But I also find myself with the ability to laugh a lot more (even if it’s on the inside) at the craziness of children. I appreciate them for who they are and I am thankful every day that I am given the privilege of being their mother because tomorrow isn’t guaranteed.

Then I continue to share those Facebook posts, write stories, and talk about the ugliness of DIPG, because it needs to be shared. These families will help the medical community find a cure, forever revered for the sacrifices they have made and the unwavering love they have shown.

You can support DIPG research and awareness through The ChadTough Foundation’s RunTough for ChadTough event on September 24. Run in Saline, Mich., or anywhere as a virtual runner.