Raising Awareness in September

this is what childhood cancer looks like

September is Childhood Cancer Awareness month. Social media feeds will be flooded with facts and figures about why it’s so important to raise awareness, help families, and fund research for kids with cancer. We need to raise awareness about how many children are impacted by this disease, what the survival rates look like, and how treatment impacts children in the short and long term. But my post today is intended to raise awareness for what this disease does to families. How it impacts the children and parents who are beside these young patients every step of the way.

I spend so much time researching childhood cancer, and in doing so I come across a lot of families. Far too many. Below I've paraphrased a small collection of situations we find ourselves in, and thoughts that haunt us as cancer parents. No one wants to imagine him or herself in our shoes, obviously. But please, take the time to read these sentiments. Allow yourself to feel them with all of your heart. And then share them. Because awareness is important.

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My son looked up at me, eyes full of tears because he wanted to walk so badly, and he said “I have confidence in you, Dad. Help me. I know you can.” But I couldn't.

When they wheeled her away for a procedure, I saw pure fear in her eyes for the very first time in her life. When she returned, the fear in her eyes was replaced with unbearable pain. I had seen her jump at the sight of spiders, and cry when she skinned her knee, but nothing could ever prepare me for the depth of what I saw in her eyes today.”

I mean, can you imagine? You have this perfect, beautiful little boy who you love more than anything in the world and the doctor tells you… ‘Take him home. Hug him. You have three months left.’

I’ve been rocking him to sleep singing “You are my sunshine” since the day he was born, but never did the words gut me like they do now. He’s ten now, and I started rocking him in my arms again. I can barely get the words out through my tears… “Please don’t take my sunshine away.”

I am her mother and I'm supposed to make her feel better, but my kisses can’t fix this. My weakness is exposed. I am completely powerless against the pain she is suffering, and she looks at me with pleading eyes to somehow make it stop. What am I supposed to do?

My brother was the star. Everyone loved him. When he had cancer, it’s like we were famous. I remember how people cheered for us! Then he suffered a brain bleed a few years ago. He’s immobile and he can’t speak. My parents are the best, but they have to spend most of their time taking care of him. I’m so angry, so sad, and I’m just so lonely most-of-all.

It’s been seven years since she’s been off treatment, and believe me we are grateful. But please remember the cost of the cure. She is at least a foot shorter than others her age. She will never reach a real puberty. Most of her hair didn't grow back after radiation. She wears hearing aids and glasses. She struggles in school. She wears braces on her legs and walks with crutches. She doesn’t have any friends. Most kids don’t just get better and move on after treatment. They suffer a lifetime of challenges due to the treatment received at such a young age. We have to do better than this.

Cancer took away his ability to run and jump, then to walk, then to sit, then to eat and speak. It hurts to know kids who are so pure, sweet, and innocent can have all the joys of life taken away, when there are so many others who don’t appreciate their own lives, their families, or the healthy bodies they live in.

The doctor's appointments are constant. Every time I strap her into her carseat she asks "where are we going?" with concern in her voice. I have started ignoring the question. She asks over and over again, but if I tell her the truth the screaming will start and the hour-long drive will be brutal. Instead I deflect. I avoid. I distract her by starting a game of "I-spy." It all feels so deceitful. 
 

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I just wrote about a recent experience when I received a sign from Ty and his ‘Papa’ who passed away this summer. I spoke about how when our time comes, most parents just want to know that they “did good.” The most important thing God has entrusted us to do is to be good parents. In that regard, I will always know that I failed. I failed to keep him safe from cancer. I failed to save his life. I failed to help him when he was in pain. I failed to keep it together when he needed me to.

I know it is not logical. I know, in theory, I should carry no guilt. I should accept the limits of my humanity. And over the course of grieving for ten years, I promise that I have come to terms with these feelings and I am okay. But the guilt will remain until I can hold that face in my hands again, hug him, and tell him how sorry I am.

September is childhood cancer awareness month. Our color is gold. Spread the word.