At the time of this introduction, we’ve been struggling with the effects of acute flaccid myelitis (AFM) for just over nine months. August 21st, 2016 is a day that my family won’t soon forget. It’s the day that my perfectly healthy, happy, just-three-days-shy-of-two-years-old daughter would go down for a nap, business as usual, and wake up completely unable to use her right arm, with no explanations in sight.
I’ll go into more detail – I’ll go into every detail – in later entries, but for now let me just stress that our lives would change in the weeks that followed in ways that people who haven’t experienced this type of devastation cannot begin to comprehend. My purpose in launching this blog is twofold: first, to try to bring a greater understanding of our struggles with this extremely rare and even less heard-of condition to light; and second, to attempt to reach out and connect with others who have children with disabilities in general, but especially those parents of children with AFM or other demyelinating diseases.
Love Bug, perhaps obviously, refers to my little girl; it’s one of the most common endearments I use. We call her paralyzed arm her “lucky” arm, after Nemo’s lucky fin in Disney-Pixar’s Finding Nemo, and often refer to it simply as “Lucky.”
I can tell you right now, this is not your typical parenting blog. I’m not even sure it IS a parenting blog.
It’s a blog that will chronicle the ups and downs of our life raising a child who was literally as perfectly healthy at birth as it was possible to be, and who was perfectly healthy throughout the next two years of her life up until the time of her nap on August 21st, and who woke up with a disability.
It’s a blog that will chronicle our determination to continue giving her the fullest life possible, while also stressing the importance of our own self-care.
It’s a blog that will showcase all of our moments of hope, the times we feel most blessed, the times when we can’t believe how lucky we are, as well as the raw, gritty, ugly moments that come with such a life-changing tragedy.
It’s going to be a ride, sometimes smooth, usually bumpy, and I hope you’ll come along.