Today it has been two years since my daughter’s best friend passed away from Acute Myeloid Leukemia. Samantha and “O” met the summer before kindergarten started at Kindergarten Camp. They bonded instantly. They happened to wind up in the same kindergarten class that year, and the same class several other years. Samantha and “O” attended each other’s birthday parties every year, had an annual movie date over winter break, were each other’s recess buddies, play date buddies, and truly understood each other’s quirkiness.
When Samantha and “O” were in 6th grade, I got a call from his mom that he had been shockingly diagnosed with Acute Myeloid Leukemia (AML), a form of leukemia that is extremely rare in children with a very slim chance of survival. At that moment I instantly went into 2 modes: 1. How can we be there for “O” and his family? 2. How do I help my child through this?
Almost a year after he was diagnosed with AML, “O” passed away. I cannot give advice to someone on how to process the death of their own child. And I never in my wildest nightmares expected to be supporting my child as she dealt with death and mortality on the deepest level as a 7th grader. I may have not done everything perfectly, said the perfect thing, or reacted the perfect way. But two years after “O’s” passing, if I can share something that can help another parent guiding their child through illness and death of a loved one, then I want to pass our experiences along. Below are some tips that I’ve put together to help others in similar situations. I talked with Samantha to make sure she didn’t mind, and I also assured her that private discussions and events would never be shared.
First, and foremost, be honest with your child. However, there is a fine line between honesty, and Too Much Information. (TMI) Honesty is safety and trust for a child, but TMI is scary. From the get-go I share with Samantha was O’s diagnosis was. I never told her it was hopeless, and I never told her the little details of what the disease did to every part of his body. I never told her he would definitely be cured, even when there was a possibility that he might be. And here’s the hard part, when we knew for sure that he was not going to recover, months before he passed, I told her.
My goal was always to keep Samantha from being shocked and feeling like she was betrayed by information, or lack there of. What I wanted to prevent was, “Why did you tell me he was going to be okay and he isn’t?!” or, “Why didn’t you tell me that he wasn’t going to be okay?!”
Be Prepared Before Visiting.
When a child has a terminal illness, what you see from visit to visit can be very confusing. They can look completely normal one visit, but drastically different the next. On the other hand, one visit they may not be coherent or remember you visiting, and the next they may be joking around. Hair loss and weight loss can be a big shock if you aren’t expecting to see them. O’s hospital was about an hour from our house. I used that time to gently and briefly talk to Samantha about not having expectations for the visit and how he might look. I also let her know that we would always restrict our visits to one hour, and if at any point it was too much or overwhelming, that we could come up with an excuse to leave. I also feel that it’s very important that I mention that I talked with Samantha and let her know that our visits to O were not about us or what we needed. Our visits were to distract him from the heaviness of the hospital, sickness, and boredom. If I felt at any time that Samantha was not emotionally able to visit, then I would not have taken her. When we were there we played board games, did crafts, watched YouTube videos, talked about school gossip, or sometimes we just sat and talked with his parents while he was sleeping.
Decompress After Visiting.
Oh, the heaviness, but oh the joy. Sounds confusing? Samantha would worry so much about O if we went more than a week without visiting him. Kids’ imaginations can run wild with the unknown. Thankfully, because Samantha and O were so close, we were welcomed by his parents to visit often. After visiting and seeing O, she felt much better. But there was so much to take in while we were there. Over the hour long drive home we would talk about what we had seen or heard. I would sometimes gently ask a question to get the conversation going, However, there were times when she didn’t feel like talking, so I didn’t push. During the visit I tried to notice things that I could anticipate upsetting her, so I made a point of working phrases into conversations over the next week that could nonchalantly explain or give help processing.
People to Talk To.
My kids and I are very close, and we talk about absolutely everything. (I love that you can open the door to conversation with teens by saying something shocking. Once they feel they won’t shock you, they’ll open up a lot more, by the way.) But I am not so naive to think they my kids will never keep anything from me. I talked with Samantha and let her know that if she ever needed to talk to someone when I wasn’t with her, or she didn’t feel comfortable talking to me, there are specific people to talk to. I told her why I picked those people: They wouldn’t gossip about what she talked with them about. They would be a good listener. They had faith similar to ours. They were people she could trust. I told her she could talk to: a specific adult family friend, a specific older teenage girl I trusted, two specific current teachers, one specific past teacher, her brother, and her parents. (I’ll type more below about “talking to people.”) I also told those people that I had let Samantha know she could talk to them. I asked them if she said anything worrisome or dangerous, to please let me know, but otherwise I just appreciated them being there for her.
I want to preface the rest of my post with this: throughout O’s illness and after his passing I observed behavior in people that I never expected. The age of social media has left us as a society with an entitlement attitude towards private information that sometimes is a gross violation of people’s privacy and feelings. People in our community were very insensitive about asking (prying) a 6th-7th grader for details about O’s health and how he was doing. I let Samantha know that it was not her responsibility to be a source of information for people, and I armed her with several specific phrases that she should give people when they asked. These ranged from: “I don’t know. I’m not sure. I think his mom or dad will post on Facebook soon. Thanks for asking, I don’t know.” I told her that even if she did know, that it was not our place. I also told her that we were in the room for private doctor’s information, private family conversations, and overall just PRIVATE, personal things. There are HIPAA laws that protect people’s privacy, and even if we weren’t governed by those laws as friends, we would give them the same respect. Again, our way to support O and his family was to be there for them, not to be a mouthpiece to the community. A 12-13 year old child does not bear the burden of providing adults with information. Instead of just telling her, “don’t say anything”, I had to equip her with specific things she could say when pressed for information.
Communicate Privately to Teachers, Coaches, other Adults.
I communicated privately to Samantha’s 6 teachers through emails about what was going on, especially after O passed away. I let them know what had happened and how close they were. Many of them knew our story by following along on O’s parents’ Facebook pages. But not all of them knew us personally. I asked them if they noticed drastic changes in behavior, hanging out with people she didn’t normally hang out with, etc. if they would please let us know. Most were very receptive. I did have 2 teachers that never responded, but I figured if she was acting differently, another teacher would notice it and let me know.
Keep Them Busy.
After O passed away we got S involved in multiple clubs at school. We kept her busy, and we kept her talking. (Talking in the car is a safe place for kids! No awkward stare down from adults. They’ll say a lot to the back of your head that they’re scared to say when you’re looking at them!) We felt that at age 13 imaginations and emotions run wild. We didn’t want Samantha sitting in her room with nothing to think about but O’s death. We gave her healthy time and space to talk, but we made sure she didn’t just have endless hours of nonproductive thinking time. We also wanted her to be around other kids. Being around other kids can be less “heavy” than adults. Kids are also (but not always) less intrusive about information.
It’s okay to separate school and grief.
We told Samantha that it was okay not to be thinking about O’s death every minute. In order for her to focus on school work and other friends, she had to know that it was okay to give herself time later in the day to deal with her grief. Samantha knew that she could still be sad and missing her friend, while giving herself permission to do her best in school and “hold it together” until she got home. Samantha knew that at home she was free and safe to have the emotions of grieving. A couple of problems that we ran into about school/church/grief were that adults didn’t stop asking questions, and people made comments like, “You don’t seem very upset.” Which leads me to my next point…
You, adult, are the buffer.
O’s illness and death weren’t just hard for Samantha. As my child’s friend from the age of 5 until almost 13, I had also spent a lot of time with him. I made cookies with him and drove him places. I imagined their high school years together and beyond. O’s death came during a year when our family experienced the death of 5 people we knew and the death of our family dog of 10 years. Of all of those deaths, O’s was the hardest on me. But as the adult, as the mother of a child dealing with illness and death, my job was to put my child’s needs above mine.
This meant that I had to make some tough decisions. I had to be buffer between my child and the world at times. I had to be the buffer between her and additional stress. I had to make some really tough choices. On the day that we found out that treatment was not working for O, and he was only going to live for a few more weeks, we had an important family event to attend. It was an event that was very important to extended family members, and it probably hurt them that we didn’t attend. But this event was also related to cancer, and I had to protect my child from more than she could handle. Then after O passed away, a few weeks later a 5th person we knew passed away. Again, I know that it let some people down that I didn’t allow her to come with me to the funeral and that my husband stayed home with her. I understand that it might have been hurtful to them. But as the adult in charge of protecting, I knew that nothing good could come from a 13 year old attending another funeral that year.
I also had to be the buffer in other ways. Other adults that were not close with Samantha offered to talk with her if she ever needed to talk. Parents of kids she didn’t know very well offered to take her to some fun place. These people all meant well, with kind hearts and intentions. But if you have never sat at a table and shared a meal with us, if you don’t know our phone number or address, then you don’t know Samantha well enough to be that kind of support for her.
After O passed away, people wanted to know how Samantha was doing. My standard answer to people we didn’t know very well was to say, “She is doing okay. Thank you for asking.” But like I said above, people feel entitled to private information, almost like they’re watching a reality TV show. I had several people say to me, “No, how’s she REALLY doing?!” Almost like they wanted details of a dramatic meltdown scene with an exploding car in the background. Buffer, parents, buffer. You do not owe anyone that is not close to you information.
Not everyone will “get it”. Because, like I said, they mean well. But keeping things calm and safe, having healthy conversations with people you trust, and knowing your child’s limits are far more important than the feelings of other adults who don’t “get it”.
Finally, two years later, sadness over the loss of O continues. We look at pictures. We look up funny YouTube videos that they laughed at together. We light a candle for him. We hear a commercial and say things like, “That voice sounded just like O!” or “O would have thought that was stupid.” We don’t pretend like he didn’t exist. We do productive things like collecting items to help other sick kids in the hospital. But what we do most often is, “Remember when…” Remembering is healing.
When Samantha is an adult we will talk about this time when she dealt with the death of her best friend. She will be old enough to name the emotions that she was feeling when a 13 year old didn’t know what they were. But in this space of time until she is an adult I have to let her know that it’s okay to make new friends. Her friend passed away, but it is not her identity. It’s okay to remember, carry those memories with you forever, and to move forward.