This song really has nothing to do with anything other than it is Halloween and I thought that I needed to go back to DBT song titles for Ben. Sorry that you are getting me again and not Ben, it is very hard for him to use the voice recognition software and it becomes rather frustrating for him.
It has been an emotional couple of weeks for us. October 24 marked the two year anniversary of Ben’s diagnosis. It’s not a day that we celebrate rather it is a day we remember because it changed our lives forever. We had heard of ALS but really didn’t know how it would turn our lives upside down. We have always said that we would fight this with dignity and grace, but I have to admit that it has been a challenge at times. Ben is a fighter and we are both very stubborn but the physical and emotional toll has gotten to both of us this past week.
Many of you know that Liam had double surgery on October 22 down at Children’s Hospital in St. Louis. Liam is quite the trooper and he is doing great. We head back down there tomorrow to see the ENT and audiologist to find out if the stapedectomy was a success. The hernia surgery also went well and he should be back to running next week. I have to confess that I realized during the night at the hospital that I can no longer just turn to Ben when I need something. He has always been my rock and for the first time he couldn’t be there. Technology is a great thing. We face timed a couple of times and this helped us all. It was tough for Ben not being able to help take care of Liam. I don’t think anyone of us slept very well. Don’t worry Liam was very spoiled by grandma mom! Thanks Chris for letting her have the week off to come down.
As Ben continues to get weak his frustrations grow. He wants to be independent but is finding that he has to rely on us more than ever before. Those you that know him, know that he hates this. He doesn’t like asking for anything and having someone have to help him with everything is almost overwhelming. It certainly helps that we have the amazing support from all of you. The meals, lunches, yard clean up, random cards and emails all mean more that we could ever express. I may not be very good at getting the thank you notes out but the intention is there and I truly hope how much you all mean to us.
Hug your kids!
Sign Up and Stay in Touch
Be one of the first to know when there’s an update to Ben’s website.