Well this afternoon my question was answered. I received an email from a lady named Paula and she just put everything into perspective for me. She has a little girl named Faron-Mae that has glycogen storage disease type O and has a feeding tube. This mommy reached out to ME because like me she is one of the few parents with a child that has a feeding tube and special needs. Like me, a few years ago I felt like I was the only person fighting for my child that has a feeding tube and is different. I had no-one to talk to, my child was different, my child didn't eat. Through Jason's Journey I have learnt that we are not alone, Jason is not unique, there are many children with feeding tubes and many parents in the same boat as Bruce and myself. I hope Paula doesn't mind me including her and Faron-Mae in my blog but I thought it was appropriate to explain where I am coming from and where I am going with this. The most amazing thing for me was 10 minutes ago I decided to do a search for Paula on facebook (yes stalker of note) to see where she lives as I have not had a reply to my message today. Anyway when searching I battled to find anything under the name, surname and place she works so I searched under her telephone number and I came across Faron-Mae's facebook page. Technology is powerful! Anyway when reading through her facebook page I came across a link to the article that appeared in the Northglen News about Faron-Mae. That little face and picture looked SO familiar to me. I actually came across the article again today when I was looking for something. My mom had given me the article to read in May 2013 and when looking for something today I came across the article and this afternoon her mother was writing to me! So to me this is a sign I must continue my website and blog. If my website is so powerful that it enables me to connect with people in similar situations, so be it, this website is meant to be.
I think about how far we have come with Jason's Journey, what started out in 2010, through our fundraising to go to Austria. The amount of friends I have made and amazing people and children I have met and even helped is all worthwhile. Through us going to No Tube, Graz and having this website and publishing Jason's story in the YOU magazine and Daily News, two South African families walked the same journey as us and their children are tube free today. That is what I am talking about. Through Jason's Journey I have also met SO many people that have connected with me and helped us out with Jason. If it wasn't for me being public and continually pushing this blog and website we would not be where we are today. We have had unbelievable help from our family, friends and the community with financial support and fundraising support and we would not be where we are today. Jason has become a part of a lot of your lives and with your support we have gone places and will continue to go places. We travelled thousands of miles to Graz with the support of everyone reading my website and we would not be where we are today had I not taken the plunge and started fundraising and started this website. I started this idea because of two little boys name Matthew and Joshua were going to Graz and they were about to be tube weaned by No Tube and then and there I decided that this is what I was going to do for Jason and I did it. Had it not been for this website and my Facebook page I would not have heard from Kelly from Rare Diseases and Jason would not be on the right medication that he is on today to help with his cyclic vomiting and stomach issues.
So do I really want everyone knowing every little details of our life with Jason - yes, why not if it can help them in some way, why not. Do people judge me? Of course people are going to judge me but they have never walked in my shoes, they don't know what it's like raising Jason and if they want to judge, that's ok, I am fine with that. Do I sound desperate at times? Of course I sound desperate because most of the times I am feeling desperate and despondent. I write from the heart, that's me. What purpose is Jason's Journey - well that's a tough one, there are SO many purposes of Jason's Journey. I want to help others, I want to reach out to others that are in a similar situation. I want to get the best possible help and care for Jason and the best way I know is to go public. I have nothing to hide. I want to be able to help others in similar situations, I want to inspire people that no matter what your situation, you can get through it. I see how many people like us need the help, the support emotionally and financially and I want to help those people. Jason isn't the only special little man. Of course he is tops in my books but there are SO many other little kiddies that need the help. Hopefully one day I will be in a position to set up a non profit organization to help those with feeding tubes in need. Help those families afford the therapy that their kiddies so need, help them to be able to feed their kiddies the right formula because they don't have to worry about where the next tin is coming from. Help those that have the potential to eat to get to No Tube in Graz to go through the extensive feeding program so one day their kiddies can eat too. There is such potential out there, so much help out there but when you are one little family struggling to survive, you are basically on your own.
So what is Jason's Journey's purpose - the purpose is for us to one day see Jason eating and in the process help those that need help as well.
As usual I have rambled on and on. Way past my bed time so I am going to say night night all.
For those of you that are following my blog PLEASE write me a comment. It's always nice to hear from those that are reading my blog. After all besides my family, YOU are the people that keep me going, that inspire me to continue, that help us get through this tough journey ;-)