Musings of a Marfan Mom

M is a very perceptive child, and he’s close with his Nona (my mom). He’s sweet and sensitive and, as is the case with many autistic children, he has a lot of anxiety. When I left for North Carolina, I worried about how he would handle my sudden departure and how we would eventually explain my mother’s diagnosis to him. I wrote a note to his teacher, consulted with one of his doctors, and left the rest up to Mark and God pretty much.

His doctor suggested I explain cancer scientifically, which makes sense because M is really into anything science these days and loves the Magic School Bus. She said that I should make sure to let him know that some days I would be sad, and that it’s ok to be sad. She also said I shouldn’t expect him to ask many questions because he’s only 4.5 and cognitively he’s not capable of that, but I found that to be NOT the case. He asked some pretty thoughtful questions. Finally, she suggested the book Kemo Shark (free to download). I opted against using that book however. The premise is that Kemo Shark kills cancer cells by shooting lasers out his eyes and the last thing I wanted to tell my very literal child is that his Nona had a shark inside her. He’d either be confused or terrified!

So Sunday night, after I was home and we were all settled and M had climbed into bed, I sat down with him and had the first of what may be many “cancer conversations.” Hopefully our approach may be of help to someone else down the road.

First I asked him to tell me what he knew about why I’d gone to be with Nona.

M: “She was sick and throwing up.”
Me: “Yes, she was sick. Do you remember when Mommy had surgery on her belly? Well Nona had surgery like that, but on her head.”
M: “Why?”
Me: “Nona is sick with something called cancer. Now you know from the Magic School Bus how our body is made up of cells, right? So cancer makes bad cells grow and grow and grow way too fast. These cells grow into lumps called tumors. Nona had surgery to take away one of those tumors, and now she needs some medicine called chemo to try to stop other tumors. But, chemo will make her sick because it kills some good cells too. Chemo might make Nona very tired, or make her tummy hurt. She might lose all her hair. You shouldn’t be afraid of her though, even if she looks different.”
M: “Why should I not be afraid of her if she looks different?”

Me: “Because even if she looks different, she’s still the same Nona who loves you so, so much.”

M: “Oh, ok!”
Me: “Also, sometimes I will be sad. I might cry. I’m sad because Nona is my mommy and she is sick. It is ok to be sad. Do you have any questions about cancer?”

M did have three questions. He wanted to know what tools the surgeons used to do surgery on Nona’s head. He wanted to know “when will the good cells grow back?” He also asked if cancer hurts, and if his Nona was in pain. He brainstormed things he could do to help Nona feel better. Then, he let me know he’d asked all his questions and asked for his goodnight song and that was that. I told him we’d read some stories about it later and he could ask more questions whenever he wanted.

I did find two books that I think will be helpful. One is called “Mom and the Polka-Dot Boo-Boo” and the other is “You are the Best Medicine.” The former is produced by the American Cancer Society. It’s very simple and I wouldn’t use it for kids a whole lot older than M. The second is from the point of view of a mother to her child, talking about how her memories of her child are comforting to her. Both books do end with the parent being cured, however. I’d be interested to find a children’s book that doesn’t end with treatment ending (life has no guarantees, so why make those promises?), so if you have a suggestion please let me know.