“From the minute he was born I knew something was different with Hart,” she began. “The nurses struggled to straighten his legs to measure his length. He suckled hard, shallow, and often until I bled and he spit up black.”
Edmonds, who gave birth to Hart and his twin brother, Hayes, in June 2018, said she took Hart to several doctors and specialists.
“I told our pediatrician – she said he was fine,” she wrote. “I begged for a neurologist referral and when I got it – he said he was fine. I then begged for a neurologist who specializes in Cerebral Palsy (I jumped through hoops to get this appointment, so many hoops) and she said he might be fine. I then begged for an MRI.
“Eight days after the bottom fell out of my life I put my son through an elective MRI with anesthesia,” she said, seemingly referring to her discovery that husband Jim had been having sexually explicit conversations with another woman.
A few days after he underwent the MRI, Edmonds, who also has daughter Aspen, 2, with Jim, learned what was indeed afflicting Hart.
“Three days later Hart’s neurologist called me,” she wrote. “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.’ 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.”
Edmonds enrolled Hart in therapy and then began discussing the matter with her family, including husband Jim.
“I explained to Jimmy how we are not somehow compromised or punished for having a child with special needs (whatever that may or may not mean!), we are BLESSED,” she wrote. “I will go on about this another time but just know that I do not see his diagnosis as anything but a gift: we were chosen to take on this special person. I truly feel as if we’ve doubled down and won the underdog hand. Truly.”
Edmonds knows the odds are stacked against Hart, but she plans to tackle this situation one day at a time.
“I pray for a miracle and I grapple with how to navigate his life. Thirteen days after his diagnosis I finally put these thoughts to paper,” she wrote. “This is a heavy challenge as a mother: where do we go from here? This is where: one foot in front of the other.”