Showing posts from August, 2021

The Weight of Parenting a Medically Fragile Child

            The Weight of Parenting a Medically Fragile Child Debating whether to call the paramedics or take him to the E.R. this time… Heavy. Being your child’s nurse, without any training and constantly watching, listening for any sound of distress, and jumping up in an instant to suction him or care for a seizure… Heavy. Knowing that no one truly understands our life unless they have lived it. Heavy. Thinking that if we are authentic with our struggles, then people will say we are “negative thinkers” or everything is “all about us.” Heavy. Driving in the car, praying he won’t have a seizure until we get home and then having to pull over to reposition and suction because, of course, he did have one and now needs oxygen. Heavy. Suctioning at every stoplight. Checking my mirror to make sure he is breathing. Heavy. Dealing with the school district and fighting for my child’s rights and safety… Heavy. Hearing my oldest ask why we have to be one of the “rare” families with CDKL5 and that