Addison Wes Watkins, was born on July 27th, 2007. He was our third son, the baby boy of the family. We always had this notion that he would sort of raise himself, as he would learn to do so from the best, his big brothers, Riley and Cameron. But, “Adi,“ as we lovingly called him, had a different plan for us, a different destiny. We had a running joke, that he’d put a ‘monkey wrench‘ in the whole program, by making sure that his father and I would forever take care him. We would grow to learn to all operate together, as a UNIT, to give Adi all that he needed to live the fullest life possible, despite the many challenges that would come his way.
Born healthy, shortly before Adi turned a year old, we’d noticed that something was indeed very different about him. During a routine, ‘milestone‘ check up, we’d share this with his pediatrician. That day, would forever change things in our lives, and little did we know, that we’d come to embark on the epic journey, which was living Adi’s very unique life. By then, we knew at this time that Adi was indeed one-of-a-kind, and so that required him to have highly specialized care. Our family could never have known what this would come to entail, but what we did know for sure, was that we would forever be by Addison’s side, indebted to giving him the best life possible, which he deserved. Our mantra then, was “Don’t let this disease define you, but instead, you define it.”
The ‘it’ was the unknown, as early on in Adi’s life, no doctor, therapist or specialist could quite pinpoint what Adi’s differences actually were nor what they were caused by. So our family set off on an exploration, to figure things out. What we needed to know, was, “What disease would render Adi to be unable to speak, or to walk or be incapable of being self-sufficient,” but, we would quickly learn that it was something so special, it was all his own. This solidified our duty, as an extension of him, of his body and freeing spirit, to help him explore the world and feed his beautiful healthy mind, with age-appropriateness and just good old crazy boy stuff!
Our love and respect for Addison kept us devoted. We’d set out to provide him with a sense of ‘normalcy,’ which brought him to the Metuchen school district. Long standing residence of the town, Addison would be enrolled at MOSS, CAMPBELL and EDGAR MIDDLE SCHOOL(s). This would be the start of Adi’s beautiful friendships, and began to create an extended family who would come to encourage and rally him on, through therapy, learning, experimenting, socializing, bonding and just letting him be a kid. Our family took so much comfort in the fact, that our Metuchen community was cherishable. And, Adi also had the blessing of building an even bigger network of family, at his other schools in Morristown and Sayreville, where he was also loved by his PG CHAMBERS family and CENTER FOR LIFELONG LEARNING team.
Adi would go on, with our unit in tow, to forge countless more relationships with some of the top medical specialists across the country, also with specialized therapists, including feeding & swallow therapy, hippotherapy, OT, PT, Speech, cranialsacral therapy, Feldenkrais for children therapy, augmentative & alternative communication, orthopedics & bracing, seating clinic, aquatic therapy and homecare nursing. Adi’s vast team of experts reached far and wide, from CHOP, PENN, RWJ, JFK, NEWARK BETH ISRAEL, ST. BARNABS, ST. JOSEPHS, COLUMBIA, CEDAR SINAI, CHLA, CHOC, CSH-Mountainside, HACKENSACK MERIDIAN, NYU, NJPFA, FIELD CENTER, METUCHEN PEDIATRICS, JFK REHAB, UNIV. OF ROCHESTER MED. CTR., SPECIAL STRIDES, BOSTON BRACE, ELITE ORTHODICS & PROSTETHETICS, PREFEERRED HOME HEALTHCARE & NURSING, to TOBII and KIDZDENT.
In the end, Addison had become warrior-like, and he mustered the strength, to get through each day, each challenge, all in keeping that infectious smile on his face. With all his medical complexities, he woke up everyday, with fire in him to work hard and to be very present, in all that he took part in. He would defy the odds, giving us a whopping 13 years to enjoy him and relish in his kindred spirit, even giving us the blessing of witnessing him become a bonafide ‘teenager!’ For most of his years, Adi was tagged with a diagnosis of ‘Unknown,’ and ‘Dyskinetic CP,’ or a ‘Rare form of Dystonia.’ At age 10, his CHOP team would finally find his true diagnosis, which was “ADCY5-GENE MUTATION,” basically teaching us that Adi, who had been born healthy, some how had a gene mutate on him, which brought him into a very special world. And, Our family is thankful, to have entered that beautiful world with him.
He fought a war, and he gave absolutely everything he had in him. In the end, our unit, along with his extended family and medical teams, all would come to learn from him...to be humble, have fun, be happy and embrace uniqueness, specialness, complexity, simplicity, doing it all with the greatest level of respect, and to give him his dignity. We couldn’t be prouder, our sweet baby boy, our angel Adi, for he has given us so much. Our sweet boy Adi, you are LOVED, you are LOVED, you are LOVED...rest peacefully son, brother, grandson, nephew, cousin, godson, friend.
On September 13th, 2020, we lost a fallen angel, Addison Wes Watkins…our Adi. Addison is survived by his parents, Wesley Todd Watkins and Renee Riley Watkins, his big bro’s, Riley Todd Watkins and Cameron Wesley Watkins, his grandpa Robert ‘Bob’ Watkins, his grandmother/Mamaí Elizabeth Watkins, with grandfather William Riley and grandmother Diane Felicia Riley, and uncle William Riley and aunt Sandra Riley, uncle Dr. Marc Watkins, aunt Dr. Deann Bullock Watkins, cousins Felicia Renee Armstrong and William (Ray) Riley, his dogs, Zuko & Appa, and countless other family members.
The visitation will take place on Sunday, September 20, 2020, from 2-6pm, at Costello-Runyon Funeral Home, Metuchen.
Flowers are welcome, but donations may also be made instead to the Children’s Hospital of Philadelphia at https://give2.chop.edu/give/241805/#!/donation/checkout?utm_source=main_nav