1. The dude's origin story and how we got into The Crappy Situation

For the uninitiated, my son, who we call the dude – lower case because he’s not a King or anything (his words), was born at 24 weeks and weighed 1 pound and 9 ounces. He wasn't supposed to be born alive. When he was, they said he wouldn't make it 24 hours. When he did, they thought he'd be unable to walk, talk, or do much else. He had a grade IV intraventricular hemorrhage at birth and had to have his first neurosurgery to place a VP shunt when he gained to 2 pounds. He defied all the odds and has continued to do so all his life. He does all the things they said he'd never do. He graduated high school, won medals in Special Olympics in running (with his walker), he rides horses and has his eye on competing in Special Olympics - Equestrian. He also runs a food blog (Covid times put him on hiatus, he wants to get back to that) for which he was featured in the Charlotte Observer in 2016. That story won 2nd place in that year's Association of Food Journalists awards. He was one of the first people in our area to have selective dorsal rhizotomy and was on the cover of the hospital brochure about it for a number of years. He was also in the study that brought us Nexcare/Tegaderm. He was also the very first infant in North Carolina to receive Surfactant, which is given to preemies with underdeveloped lungs to prevent their alveoli from sticking together and collapsing their lungs. It was approved the day before he was born. He also led to the discovery that caffeine helps neonates with pulmonary issues. He was in the first and second clinical studies for Botox for spasticity. The doctors were so convinced he wasn’t going to make it they let me drink Dr. Pepper for the entirety of the 2 days I was hospitalized giving birth to him. True story. And that led to a study on neonatal caffeine for preemies. The dude has done a lot.

He has Cerebral Palsy of the spastic diplegia variety, pervasive developmental disorder, echolalia, hypertension, and hydrocephalus which is treated with a VP shunt. He loves gaming, good food, playing football and basketball, music – and he goes DEEP with music, our house full of cats and dogs, and especially loves our horses.

He's almost 34 years old now, and I raised him as a single mom for 19 of those years until I met the only Dad he’s ever known. In the last year or so, his mobility has progressively gotten worse and it seemed as though his right leg just couldn’t hold him up. We finally got a doctor to listen and a referral to orthopedic in May of this year. The short version is his knee is a mess. It was initially stated as arthritis, but it's more serious than that and we’re working on getting deeper answers as well as solutions.

We recently moved into our new home to fulfill lifetime dreams for my husband, me, and the dude. It has become a living nightmare due to his MCO (Partners Health)  denying the home modifications we requested saying they aren't necessary. The dude can't access his bathroom due to the lack of modifications and is now severely depressed and is slowly giving up the fighting spirit that helped him defy all odds all his life.