If you guessed me, yes you guessed it right. It's me. I don't actually know how I feel about it? I haven't had time to worry and stress about it to be honest. I have been far too busy for that. So tonight I decided I better sit down and take some notes and decide what I am going to talk about. I was only asked on Thursday which was quite a surprise to me and real short notice given I don't have too much time to prepare - says me writing my blog on what I am going to do???
So I thought maybe to talk about Jason's story, his birth story, his life story, Jason's journey - that would be the obvious I guess but I would also like to incorporate our experiences we have had as special needs parents, talk about the fundraising aspects of things. How we started fundraising, why we started fundraising, how to start a trust and a little bit about tax implications of raising a child with a disability. A lot to summarize in a short space of time and I hope I don't get stage fright and babble. It's a lot to talk about but I would like to summarize Jason's story and talk about our experiences of raising a sickly child, raising a child with a feeding tube, trying to get over and get through the fact that we have a child that is different, that we went through such an experience these past 8 years with Jason. That we raised funds to go to Austria for tube weaning but we still have a child with a feeding tube and to summarize that it's ok, it really is ok. We have not failed as parents. That no matter what circumstance you find yourself in, don't give up. NEVER give up. You will get through it, you will have ups and downs but you will get through it. You are tougher than you know. You get stretched to your limits where you think you cannot handle any more and more is thrown your way. BUT it's ok!! Times may be tough now, you may have a bad day today but tomorrow may be a good day. Don't look at your misfortunes, look at how far you have come, look at the possibilities, look to the future. Don't worry about what may happen if it hasn't happened. Stay positive and keep going forward.
So I guess I have decided what I may talk about - hope it sounds ok! While doing some of my notes the obvious was to go back to this website and look at our history, read the articles, read about our trip to Austria and our second wean. SHU sometimes you forget these things. I forget how sickly Jason use to be when he was gagging and vomiting non stop getting admitted so often for dehydration, gastro and vomiting. Reading about Austria and how hard it really was. I don't think you forget I think you just put it at the back of your mind. I am so glad I started this blog and have continued to blog about our experiences otherwise I would never remember all of this. I look at some of my expectations before we went to Graz. A lot of it is the same - the obvious being getting rid of the feeding tube and tube weaning which hasn't changed but goodness little did we know that our journey wasn't going to be a short 3 week in hospital tube wean. We actually learnt how little we knew and how sickly our child was. It was the start of our journey. We learnt about Jason's immunodeficiency in Austria. We learnt what we should and shouldn't do when tube weaning and trying to encourage your child to eat. We learnt that we weren't the only ones with this "severe oral aversion" problem. We learnt that it wasn't our fault. We've learnt that it's OK. I guess the most important thing I have learnt through our experience is to take things one day at a time. That's all you can do when you have a sick child, a child with a feeding tube, a child with an invisible illness, a child with a rare disease. Life is tough, the challenges we have had to face as parents, no parent should have to go through with their child. You are pushed to your limits, you marriage gets tested and strained, financially you think you will never get through the month, never be able to afford the treatment and therapy your child needs yet you get through it. You do.
Today is father's day - this month we celebrated our 13th year wedding anniversary and 21 years together. Bruce is my rock, he is my soul mate. Without him I don't know what I would have done. I am blessed that he has stuck by my side through all the hardships we have gone through. He is an amazing dad to our two children. I couldn't have asked for a better father for my kids and a better husband for myself. Yes we have been through our trials but goodness given what we have gone through it's a miracle that we are still together. That miracle is called LOVE and we both know that we love each other very much. I know Bruce won't be reading this as he doesn't follow my website but I just wanted to share with the world that I have an amazing husband, his name is Bruce and he is a fantastic father. He has gone through many things a father and husband should not have to go through and he is still here by my side 21 years later. One amazing man I get to call my husband!!
So after that blog update I still don't have notes for my talk tomorrow night. I'm going to have to speak from the heart, like I do with my blog updates but speaking face to face is very different to typing your thoughts. You don't have all these faces staring at you. You don't have the pressure to "perform" correctly - maybe I am going to have to have a few drinks before I go ha ha ha. Alcohol power. Will probably make me ramble on and on more.