I can’t believe it’s been a year since I’ve written a blog post. The last one was almost exactly a year ago. It was when we went to Hawaii to help my niece move to college. We also were celebrating both of our birthdays. It was supposed to be an awesome family trip. Dave had …
Two decades. Twenty years. Today is D day plus TWENTY years. October 1, 2003, I heard those infamous words, “Yes. He has Autism.” I can’t believe how fast the time has gone. The saying, “the days are long but the years are short,” is SO true (and some of those days were incredibly long). As …
I think it’s safe to say this has been one of the most stressful weeks of my life. I know my son so innately. This trip, including today, has proved that. I couldn’t know him more if he were still being formed inside my body. I have spent all week, in Hawaii no less, on …
Our first night in “paradise.” Interesting how paradise and hell can live together simultaneously. At least in my world. I’ve spent the last 4 years dreaming about getting back to my ‘island.’ I have always felt at peace and ‘home’ on an island. Doesn’t matter which one. I just have always known I belonged right …
64 days. It was truly uncanny how it happened today. I had an appointment with Dave’s neurologist late this afternoon today. I knew he would ask, so I went to the calendar and started to count. Dave always follows me around, ESPECIALLY when I go to the calendar. He was watching me counting and realized …
It was the 2nd of July. Dave’s last seizure was May 29, 2022. I had begun marveling with each passing day because we had gone 34 days without a seizure. This was a record. He hadn’t gone a month without seizures since this nightmare started. I was hopeful we had finally found the ‘right’ concoction …
Where do I begin? I have hope, for the first time since November 21, 2021. Dave, Ronnie and I saw a doctor last night that blew my mind and gave me a renewed sense of expectation. I need to go into some back stories in order to provide full context. Ever since Dave’s seizures started, …
I don’t feel like I have any coherent story or learning to share today but rather just felt compelled to write. March 2nd I was sitting at my desk, in a zoom work call, when Dave’s ‘seizure watch’ went off. Within moments I got confirmation that he indeed had a seizure and needed to be …
Here we go again. I can’t believe this is my life now. How does a parent ever feel calm or at peace again? I don’t see how I can. I keep searching for the cause, for the reason and of course, the answer. I don’t know that I will ever find the solution to the …
