There are a few things that we have come to realize in those many conversations, and it's hard to really explain in person. We find ourselves often holding back, or not giving the full story sometimes, not because we don't want to, but because we have to consider our audience. We know it's hard to find words to say to us, and sometimes there's nothing that can be said.
Jeannie came across a blog of a parent who lost her daughter to a brain tumor, and she posted a few useful/insightful posts that resonated with us. One of them is titled "What Not to Say to Bereaved Parents." Granted it's more geared towards the loss of a child vs. still having a child, but I've taken her list, and put some of my own thoughts/modifications:
- "My mom/dad/sister/cousin/aunt/friend had cancer..."
- Yes, cancer is age-indiscriminant and it's terrible for anyone, but there something about a 4-yr old having cancer that makes it seem worse than say, someone who's closer to the end of a long life with a cancer diagnosis. While we don't wish cancer on anyone, it's just different when it's your own child who's 4. Also, there are too many different types of cancers out there, and while all of them are devastating, brain cancer in a still-developing child has got to be one of the more jarring types/incidents. It's just not the same, and relating a story of an adult you know who has cancer doesn't particularly help us.
- "Let me know if there's anything we can do..."
- Most of the time, we don't know what we need, or what you can do for us. The 2 ways we have thought of, bringing/sending us meals, and donating money, are the 2 that are always available. If you can think of something, ask us, and we'll let you know. But honestly, even more than meals and money, right now, I think we crave friendship, listening ears, and fellowship. Set up some time with us, come over or we'll head over, and let's just be friends.
- "I can't imagine what you're going through..."
- Neither can we. At this point, sympathy is something we know everyone feels for us, but in and of itself, it doesn't really do much.
- "You guys are so strong..."
- We are not strong at all. We have no choice in this matter but to move forward. It's what every parent would do in our situation. Thank you for the encouragement, but we are no more special than any other parent who loves their child.
- "Happy Holidays/Christmas/New Years/Birthday"
- Again, it's not as much of an issue, but in general, our life is not as much about the weekends/holidays/vacations, as it is about Soph's next set of appointments and how she's feeling. Those will mostly be our milestones for the next year or so. But we will try to make birthday celebrations, Christmas as special as possible for the girls.
- "It will get better..."
- How do you know? It could get worse. What if Soph has recurrence? What if the chemo has a stronger side effect? I get the "let's have a positive attitude," but it's not easy.
- "You guys (Soph) look great..."
- We might look the part, but looks can be deceiving, and usually cover up the turmoil inside.
I don't want this list to discourage anyone from saying anything, that's not the point. It's just a glimpse into the impossible conversations we sometimes have in 2 minutes or less. We actually do need and want those conversations, interactions. It's almost like therapy for us. But we also know it's hard for people to know what to say or do. Just be our friends. Be there for us. Hug us. Cry with us. Celebrate with us. Talk to us.