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
THIS IS ALS 
You will do great. You are a kind, caring, and loving woman with an amazing attitude. Sometimes we all have to redefine the lines we set. Sometimes people get their feeling hurt at first. But they usually regroup and think clearly. I will be praying even more for you!!
LikeLiked by 1 person
I think about you and Duane often and miss seeing both of you across the street. I’m not sure if you know this or not, but my husband is also struggling with his health. Last week he had major surgery to remove his entire pancreas, and portions of his stomach and small intestines because of pancreatic cancer. I think he will be ok, diabetic forever. For 2 years I have been his caregiver along with my full time job as a teacher and mother. I get strength by reading your blog and I to understand the commitment it takes to keep going everyday with a smile on your face. I apologize a lot to my children because they take the brunt of my emotional and sometimes difficult struggle. I truly believe that everything we experience makes us stronger and in the last two years I know that I have become a different person. The things that used to matter have become less important than those that were always the most important. Keep strong in your journey. Know that everything you do for Duane is what matters most. Also take care of yourself, I know that I need to think more about my health too. We love you both!!
LikeLiked by 1 person
Oh my goodness!! Hopefully everything went really smoothly and he heals quickly. I am so sorry this is happing to you guys. Thank you so much for reading and reaching out, we loved living across the street from you guys and watching the kids grow. They are amazing kids! We have a few small neighborhood kids that come over to visit with Buddy and eat ice cream a few times a week. It makes Duane so happy to have them around. There was a block party here on Monday and when I popped out for a few minutes the parents were making sure it was ok for the kids to still be around I was telling them stories about taking Sheldon fishing and wake boarding! It all does make you a different person. I feel nothing like the person who started this part of the journey two years ago, but I guess that is part of it. So many things no longer matter and I can’t believe they used to matter so much. I try to walk 5 days a week and try to exercise when I can, its hard though, but an important part! Thank you so much for reaching out! Sending you all love and hugs and speedy healing!!!
LikeLike