Hello, sorry to my fellow readers about not finishing the previous post. I got writers block for a few days and since then something has been brought to my attention.
I was advised that some readers think I like sad stories.... This could not be further from the truth. What I do is share things that affect me directly or indirectly. I am very sorry if my posts have made people stop reading my blog. Everyone out there who has a blog or a myspace uses it to express their feelings and things that impact their life. What they decide to put out there leaves them open for criticism and I am not immune to that criticism.
Yes, I do post about Neuroblastoma... I did not chose to be a part of this world. But now that I am and now that my daughter is okay, I personally can not turn my back to all the families out there that are still battling this horrible disease. Or the ones that will be diagnosed tomorrow. I still chose to be a part of a list-serv where parents can freely express how they feel about their child's treatment and not have to worry about someone ridiculing them for how they feel. Because every single one of the people that are on that list understand what they are going through. This list was a blessing for us when we were first diagnosed. There was a mother of a teenager on the list who's daughter is a long term survivor and we held on to that hope among all the stories of the children who did not win their battle. Now that my daughter is considered NED, I still choose to stay connected to give newly diagnosed families that same hope that their child will survive. It is the least I can do.
I post about children who need as many prayers as possible and if I can help them in my tiny insignificant way, then I will do it. Every single one of us in the NB community are connected, we may not know each other personally, but we all have a bond that we share. That bond is for our kids and the pursuit to see a cure for this horrible disease. We try everything we can to get the word out to the public, to make them aware, because I know all of the families out there went.... "Neuro..what?!?!" when their doctor said what their child had been diagnosed with.
I try not to let NB consume my entire life, but as a parent of a child who has had cancer, the thought of it coming back sits in the back of your mind forever. Especially with NB. It is a cancer that can grow a tumor back in two days after the previous one was just removed. With all the advances that have been made in Breast, Colon and lung cancer for some reason pediatric cancer falls way behind in research. I love the way this mother of a child with stage 4 NB put it:
"These children have not made "lifestyle choices" that exposed them to the risk of cancer, NO ONE KNOWS what causes neuroblastoma and most other pediatric cancers! But childhood cancer is not lucrative enough for the drug companies to sink money into research, and we don't have any celebrities with pediatric cancer, so our children continue to DIE."
The world of pediatric cancer is not pretty and I am sorry if people don't like reading my posts. But like I said, I did not ask for my child to have cancer, but now that we have been introduced to this world, I want to do what I can to help.
8 comments:
you should never apologize for your posts. you should never delete, change or apologize!
you also have to accept that others may not appreciate or understand what you are talking about. thats the difference of opinion.
some people feel that their lives are too hard to face such extreme situations. if those people can't handle your blog... then maybe you can keep in touch through email, if they are friends.
thats life. its a matter of the sacrifices your willing to make and the compromises you can come up with ... with others.
we be sistahs... no matter what you post... i luvluv ya :)
ohhh and sorry for being away for so long. lol i've been lost for a while. ;p
Hi Michelle,
Just having a debate with Big J about the purpose of blogs and how they are an odd balance between writing what you want and journaling, and pleasing a readership. It's a private thing and then, not a private thing and sometimes, as a fellow blogger, I have to remind myself that I can use my blog for journaling or alternatively remind myself that I have a small readership. It's a weird medium and one that really should be treated with some academic analysis but that's my own thing.
There's this conference coming up (related to work) and I'm thinking about doing something with wikis/ blogs and my classes.
Okay, too much thinking going on late at night! Did I mention how cute Lil' D is? Pinch his toosh!
Nathalie, can you make sure you let Jason know that I'm not upset.... =)
Thank you Yas!! I hope I didn't upset anyone....
Thanks for staying involved with all of the kids still fighting NB.
AMEN! I sometimes wonder when I post if I am being too much of a downer, then it think...FORGET THAT. This is my life. If people want to know about how Charli is doing, then they get to know it all - not just the peaches and ice cream part of it.
I, like you, am doing whatever I can to raise awareness to childhood cancer...esp neuroblastoma. people can not fight for what they do not know about...I call what I am doing "education", sad to say, it is not fun to hear about - but it is a reality that we must face and admit if we will cure it.
I hope you continue to post as you do. What is the list-serv you were talking about?
Thank you Brenda and Will's Dad.... It really means a lot to me... especially coming from you guys who are still fighting.
Sending prayers and love your way!
If people don't want to read, they don't have to, right? It is your blog...write whatever you feel like about whatever subject!
I never even heard of NB until I started reading your blog. If I ever come across a child or parent who's child has it, I will be better educated and perhaps handle it in a sensitive and loving way.
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