We have a virtual family. The neuroblastoma parents. A closed group on Facebook with over 3000 members. All sharing the same predicament. Suffering from the same ordeal. Asking questions, trying to learn from each other’s experiences, getting advice; sometimes just venting out their frustrations with the “normals”.
These are some of the things we, as a family, share, and you, the “normals” don’t and cannot understand. (Quotes are anonymized and you cannot find them on google since this is a closed group.)
“Nobody understands what we went through or are going through.”
“It’s so true. Ppl ask how he is but there not really wanting a full on answer. Then say but he looks so healthy! I want to scream at them but can’t no one seems to get it.”
“So true! And some say ‘we know how hard it is’ but the truth is, they have no idea. Only other survivors parents get the whole picture. I also agree that some ask how everything is out of politeness but don’t even want to listen to what’s going on.”
“Agree or how they think you should put your life on hold. When all you want is a glimpse of happiness and normalcy. There will always be the ones that don’t understand fully or those that will judge every step you take.”
“No, they don’t. I would never wish this life on anyone. People complain about having too much of this or too little of that but they never had to watch their child go through these horrible things. Our children shouldn’t be fighting for their lives when they’re so young and it sucks! I hate this life. I keep saying I need a vacation from my life but then I look at my daughter and I know she can’t take a ‘vacation’ from this so I put one foot in front of the other, smile, and keep fighting! This is our life now, whether you’re just starting out, in the middle, or you’ve been done for years. Our fears are all the same.”
“I called the feeling, the fish bowl, when my daughter was diagnosed. I was put in a fish bowl and I was in limbo – and I could see out and everyone could see in but no one wanted to be in the fish bowl with me ( don’t blame them). They were all so busy and the all ran by sooooo fast – some would wave as they wizzed by, others would sit and try and talk through the glass for a while but they couldn’t stay long. I wanted out so bad – but you know what… I still climb back in there from time to time and hide away from the world and it’s now my safe place – no one comes in – I just sit there and watch the world wiz by while I hug my little girl in the stillness – very aware of how blessed I am to know how to stop, slow down and appreciate what’s really important.” (Emphasis mine).
And some still – yes, still! – tell me “don’t write”, you are feeding the anger of people you address. You know what, when I feel less lonely, I write about other things too. Not only cancer, or the gloom and the darkness. And you know what, my writings get gloomier as the day of reckoning approaches. That fateful moment most members of our virtual family do face sooner or later…