After visiting specialists for various symptoms, Hart’s issues persisted, with Edmonds frequently being told he was “fine” by doctors and having to “beg” for an MRI.
“Three days later Hart’s neurologist called me,” she recounted. “Hart has minor Periventricular Leukomalacia on both sides of his brain (namely the white matter), but more so on his right. She said that this explains all of my concerns: the rigidity in his muscles, the (somewhat) delayed physical milestones, the lack of fluidity with arm and leg movements, the stiffness in joints, the weakness in his lower back, the somewhat favored use of his right side.”
“She told me this mainly occurs in premies and since he was not a premie (he was born at 37 weeks gestation) she believes this damage somehow occurred ‘a couple months before he was born.’” Edmonds continued. “She explained that he is at risk for being diagnosed with Cerebral Palsy and will be monitored. Hart has irreversible brain damage, it’s called PVL.”
Following the diagnosis, Edmonds was finally able to enroll Hart in required therapy. After informing her family and discussing the situation with her husband, Jim Edmonds, she said she still feels “blessed” to have her son and sees his disability as “a gift.”
“I do not see his diagnosis as anything but a gift: we were chosen to take on this special person,” she wrote. “I truly feel as if we’ve doubled down and won the underdog hand. Truly. This doesn’t mean his diagnosis isn’t a challenge… or a little bit sad, or that I don’t feel a little bit guilty. Because yes – just yes – to all of those things.”
“I pray for a miracle and I grapple with how to navigate his life,” she added. “Thirteen days after his diagnosis I finally put these thoughts to paper. This is a heavy challenge as a mother: where do we go from here? This is where: one foot in front of the other.”