Kai is finally feeling more like himself today. I just picked him up from the nursery and his volunteer told me she even got a little laugh out of him! He’s sill having a pretty ruff time overall so even a few smiles a day is a huge improvement from a few days ago.
Between parent group this morning and a special parent only dinner this evening I was able to have many great conversations with many amazing parents. This is really what camp is all about for us. Somewhere in the middle of the day I realized that this whole week all I have talked to anyone about is Kai, brain tumor world and all the associated topics that go along with it. Of course this is an obvious topic of conversation here at cancer camp, but it struck me because in the real world talking to non-brain tumor people I often find myself stressed to find something else to talk about. I try sometimes to think of ways to have normal conversation about Kai or about my life, but really this is all I have. This is our life, every minute of everyday. If you take brain tumor world out of the list of topics, I really don’t have much else to talk about.
And I’m happy to talk about it, but its a lot to keep up with. It’s a lot for other people to take on. It’s emotional and technical and SO complicated. It’s not really dinner party or playdate conversation, unless you are at camp with a bunch of other families who are also living in this world.
Yeah we have the usual small talk ‘how are you doing? Where you from?’ and then it’s right into brain tumor ‘oh your from Connecticut! So where are you treated? What type of tumor? Are you on chemo?’
No one hesitates to ask. No ones worried about saying the wrong thing. No one looks at you like you, or your child are this poor sole to be saved. No ones tells you ‘ oh he’ll be fine’ or ‘ I just don’t know how you do it!’
Not that these are all not wonderful sentiment when coming from caring and loving friends and family, it is just not the world we live in. We live in brain tumor world. Our children and our families are LIVING with brain tumors.
And here, I don’t have to worry about trying to pretend I have anything else to say.
It’s a relief. I hadn’t realized until today how hard it has become for me to have casual conversation. There is really nothing casual about my life anymore.
Maybe this is not a good thing??? It seems perfectly acceptable here at camp, but in a day and a half it’s back to the real world again..trying to find something else to talk about again.
Keikikai 
Hi there (Lisa’s cousin, Allison, here). I don’t pretend to understand for one second what you are going through, but I do get what you said about Day 4 at camp. I had brain surgery in March of 2005 for 3 brain aneurysms (a brain aneurysm killed my mom and her mom — it has been deemed hereditary on my mother’s side). I, for some reason, was spared and found my aneurysms before they took my life. I have a high chance of a recurrence and I get tested every 5 years. When I was first diagnosed, before the brain surgery, I joined a brain aneurysm support group and like your camp, it was such a relief to talk to others who “got it!”. As like you, we know family and friends love us and care about us and pray for us, but it was easier to talk to people who knew what I was going through. It truly got me through the months leading up to the surgery. Thank God for them. I will only say that I believe Kai has the best mom in the world and I continue to keep you, Kai and Mark in my thoughts and prayers. xoxo
Hi Allison I had no idea you went through all of that! scary stuff! Im glad you found a community of people who you can relate to. It really does make such a big difference. And I thank you for your continued thoughts and support. I could not do what i do with kai if it wern’t for all our of friends and family too.
Kerri, I never thought of it like this, but what you said here is so true! After we got home, I realized I really don’t know anything about anyone from camp other than their brain tumor stories. How funny and strange is that? Yet I still feel like a close friend to everyone!! I’m so glad I met you (and everyone else) and I hope we continue to have each other to lean on!