It has been one year since Talia died. I’m sorry for the absence of writing, but I have been privately working hard on drafting a full length memoir about our experience, and I found it too distracting to post here as well. I hope to have the full story written and published in another year or so (writing is hard work. . . Who knew!)I turned to this blog as a way of keeping myself sane. I needed an outlet for my thoughts, and I also needed to let people know that its ok to keep living even in the face of death. The responses I received to my writing made a profound difference in my life and helped me find confidence in my voice. I thank you all for that.I wrote because I wanted to shine a light into a topic, death of a child, that is wrapped up in fear and denial. I wanted to show that by addressing our fears, we can gain some control over them. The main lesson I learned in raising Talia is to fiercely accept the things we can’t change and to not be afraid of that lack of control. Only through acceptance can we make clear headed decisions in everyone’s best interest. In our case, that meant truly understanding the progression of Tay Sachs and then taking steps to protect Talia from having to live with its effects for a minute longer than she had to. In our acceptance of her impending death, we were able to focus on making her short life comfortable, and we were able to take proactive steps to protect Nathan, Audrey and our marriage from the fallout of that loss. It’s the hardest thing we have ever done, but we were fortunate enough to have lived it without regrets.I wrote this blog for my own sanity and also so that Talia would exist in everyone’s minds. Her impact is greater than the years she lived. I have spent this year thinking of nothing but my lovely, curly headed girl whose body melted into mine and whose laughter could freeze time. As I have been writing about her two short years and my experience as her mother, I have searched my mind, my phone and my family for every single memory we have of her, down to the smallest moment. I’ve come to realize that it is only the small moments that I miss. As I scroll through photos of my three kids, the moments that cause me to pause are the mundane ones: Audrey playing family, Nathan reading Audrey a book, Talia eating a peach. I scroll right past dance recitals and soccer goals. That is the busy stuff of life. A childhood is made in the small moments, and it is up to us as parents to catch them, not only through our cameras but through our eyes. We need to live with our children in those spaces. We need to meet our children where they are in that exact moment and not wish for more, because nothing but the moment we are in is guaranteed.Grief is hard, raising a dying child was harder. I’m grateful Talia is no longer suffering. I’m grateful that Nathan and Audrey continue to talk about her though she exists now only in our memories and in our digital photo frame. As angry as I am at her diagnosis, I am nothing but grateful that she was in our lives. She has changed me forever. I will miss her forever.
One year later