I started this blog not only to keep our friends and family updated but share our story with other ALS families, especially those just beginning this journey. I started out wanting to represent the disease as what it is, but still show that there is so much fun to go out and have. I mostly lean towards the positive when I write, in the last 24 hours I have realized that I maybe doing a “disservice” to some by not addressing some of the most important issues that are major in this complex situation.
There are a few subjects that I have avoided writing about. I didn’t want to offend or cross any lines with anyone. I also didn’t want to come across as complaining or feeling sorry for myself. I have tried to be respectful of everyone involved. I have been very careful about not saying something to someone that I may regret later. I make sure everyone feels welcome in our home and there is always food and drinks available for them. (I don’t think I should have to wait on them hand and foot, but that is another post). I have told the truth and been forward with everything surrounding Duane, his nurses and the disease’s progress. Unfortunately others have not treated me the same. Yesterday was my breaking point…
So in the next day or so I will be posting a blog about in laws; the ins and outs of navigating the craziness and emotions of ALS. Wish me luck as I try to tell my story without offending anyone (not that it really matters anymore) and not come across as petty or rude.
– xoxo Victoria