Being Seen

I often ask my kids' friends what they think of their teachers. They always tell me stuff that I don't hear from my own kids, and I like getting new intel like which teacher made a kid cry or which teacher they banter with at the bus stop. My kids' experience at school sometimes feels like a black box that I can't see inside. I just have to hope that they will tell me the important stuff. 

I think that parents often want teachers to really see their kids beyond test scores or annoying behaviors - to appreciate their quirks, find out their interests, and see them as whole people. The other part of that is that, somehow, teachers have to let parents know that they actually see our kids, value them, and want to help them learn and grow. It is an impossible expectation to put on one person who is responsible for 20, 30, or even 40 students every year.

I have just been thinking about all of this since it is the beginning of the school year and we had another 504 meeting last week. It was fine. I was in a better headspace for it, my husband was there, and I just felt more supported than last year when everything was still super raw. Also, the school has a new principal, new guidance counselor, and new nurse, so I had to fill them in on a lot of what we went through last year, but I was mindful to mostly stick to where we are now and not get into the what ifs about the future. In general, I hope the new admin team and her new teachers see my daughter beyond her diagnosis but also recognize what the diagnosis has meant for her and all of us.

Having a kid with cancer amplifies this feeling of wanting my kid to be seen. My daughter spends so much time out of school in hospitals with doctors dealing with treatments and side effects that I hope school is a place she feels welcomed and valued. When kids get diagnosed with brain cancer, their abilities may change significantly. Things that used to come easy can be much harder. Parents want people to remember who their kids were before the diagnosis and also acknowledge how devastating the changes can be. Kids spend so much of their lives at schools, and for my daughter, I hope it is a place she can feel normal and known, and not a place where she feels invisible. This is a lot to put on a government institution, I know. 

I think about this in my own life too, and I wonder whether the expectations I have for the people around me are unreasonable. I had a work friend tell me that they wanted to check in, but didn't want to do it too much. Honestly? I would rather someone check in than not. I want to be treated normally. I don't expect every conversation to be about cancer. I don't want my life to suck all the air out of the room. Everyone has shit. 

I do want my experience to be acknowledged though. People should ask about my daughter, and I should be able to say she's doing ok, but throws up every day, and I'm worried about what that means. Or yeah, I signed my kid up for drum lessons and I'm so excited for her, but I'm worried she will lose her ability to hold a drumstick and that will be devastating. We should all be seen, and we shouldn't feel like we have to put a varnish over the bad stuff if we don't want to.

I want people to acknowledge that my daughter has a terminal diagnosis, because I never forget it. I want to feel like other people know her, will remember her, and that her life means something. I want people to treat us normally and also acknowledge that life is hard, for them, for me, for just about everyone I know in some way. 

I'm going to steal another friends phrase and just say, "Life be life'n" and we should all have people around us that can deal with it. 

A Song From A Concert I Went To

Jack Johnson, "Constellations"