Yesterday evening my little mind who has not posted any deeper thoughts lately went in over drive again. Not sure why but maybe being back in a Hospital even if it was just to visit got me animated again.
Here is what I posted on FB last night:
Anke Smith To my JDM Friends ... I am just thinking but I am wondering how much easier it would be if JDM fell into the cancer category? If I told people Connor had cancer they would right away respect the disease and overall is it not like cancer? NO CURE! similar treatments ... Please feel free to give me your honest feedback if I am completely of track her
Now from reading this you can tell that there are times I get very frustrated of having to explain how serious JDM really is but it did not give the whole picture of how I feel.
We are grateful and lucky to have a wonderful supportive family and by far some of the best friends around. Almost everyone close to us and even some that are more of an Acquaintance have taken it serious from the start and have been supportive and helpful all along. I am also grateful to the Pepsi Refresh Project who opened peoples eyes and who gave a bigger voice to JDM.
I do get sad that JDM is still not as powerful a name as Cancer and Aids and therefor still does not get the Respect it should get plus receives the Government Funding I would like to to get. This is nothing new to you since I have brought this up in the past :)
No, none of this is really what motivates my little outbursts. The fact is that I am so envious at times of how little people and even medical personal knows about Autoimmune Diseases.
I am the first to admit that I was more ignorant then most before JDM entered our life in December 2009 and now I am asking myself how much I am doing good by pushing it to educate people?
Truly, yes we want people to feel sympathetic to the fact how many children are suffering and what havoc a disease can cause to a family structure and the financial stability, but really? What difference does it make for people to know this?
We get so many sad and upsetting news each day from the Newspapers and News Channels, does listening to more really lift any one's quality of life?
I am thinking that I might now be educated when it comes to JDM but I am still ignorant to lots of other sufferings that are going on in the world. If I tried to take it all in, the starving kids in Africa, the Political unrest and killings of people in wars all over the world ... where do we stop? Does my knowing this make any difference?
How about the fact I know about them all because I am a news junkie ... do I stand up to make a difference and try to make an impact? Truly, No .... because I am using all this energy to focus on 'my' world which is my family and winning the fight against JDM.
So here is it. Why do I feel the need to push people and make them aware of JDM? It did not touch their life's! (no exceptions for Medical Personal however! - haha) and maybe they just have one battle to fight on their own and I am the one that is ignorant of it? I can name you several names around me that are battling Breast Cancer and Lung Cancer and I know their main focus goes where it should be ... to fight it with all they can. Do they really, for example, need to hear about our battle?
I am telling you I wish the world was black and white at times but it is truly the gray shades that make it interesting.
Thank You Maddie, Erin, Monica, Lynn, Lucy and Vicki for responding. I love hearing the wisdom from my friends when my mind is taking me for a spin :)
Hugs,
R A C A
Anke, I think you do need to share with people. You should not diminish your family's issue because others also have it. Also, you never know when you may be sharing with someone who, unknown to you, has a child in their family who is suffering the early or less severe parts of JDM and have been misdiagnosed or blown off by the medical profession. You also never know when that one person you talk to will be someone who has access to funding or looking for a cause to support. Most funding for orphan diseases come through word of mouth and if you don't talk about it, it will remain a silent disease.
ReplyDeleteAlso, because of the meds Connor is on, it is important others understand because of the effects it has on Connor. It helps them understand he is on steriods, not eating too many donuts, that he can't do things because of his port, that the reason sometimes you cancel at the last minute is not because you didn't care, but instead because a bad day can hit at any time.
Your strength and advocacy for your son is one of the tools in helping to raise awareness and made a HUGE impact in winning the Pepsi Refresh.
From someone who knows you but never met you, keep sharing, keep posting, keep advocating. You never know who it will help or what doors it may open!