Raymond "RJ" Thomas, IV

PLANTSVILLE - Raymond Thomas, IV, 16, was called to his eternal resting place on March 18, 2022, while surrounded by his loving family at home. He was joyfully born in New Britain, CT on September 9, 2005 to Heather (Greatorex) and Raymond Thomas III.

There were three constants in RJ’s life: his blankie, family, and Margaret. RJ was an interesting boy from an early age - sucking his index and middle finger instead of a thumb. He needed a good 10-12 hours of sleep like his Momma. Bedtime was almost always 7:30pm and up at 6 or 7am. He was always early to bed, early to rise ensuring he was healthy and wise. The healthy part was a constant struggle. Despite his numerous medical conditions, he loved life and found much joy always giving more than he received. He loved going to breakfast with Daddy and Grandpa on the weekends and loved fishing with his Dad and sister despite his Dad’s distain for hurting fish. Then came the go-cart. That boy loved the freedom of his go-cart. He could and would try to go anywhere and fast! Always wearing his mohawk spiked helmet and losing blankie every couple hundred feet.

When it came to school, he had it better than he knew. With all of his special abilities he had to have many great teachers with unique skills like patience, humility and perseverance. Many of them were up for the challenge and he won their hearts. He learned a lot of life skills and did a lot of art. He didn’t see the need to learn math or reading. His work was creating joy and changing hearts. He learned some sign language and just enough words so he could communicate his message well with a smile and some love. He brought a lot of joy, hope, and encouragement to all who knew him. One such person was Margaret. She and RJ were friends from early elementary school and stayed friends through it all. She even visited in his final days to tell him a few reasons she will always love him. RJ loved to watch his favorite movies, all Spiderman movies, any Transformer movies (especially Age of Extinction), any Minion movie.  He loved playing with his Legos & Perler beads. If you were lucky, he made one just for you. Loving arts & crafts with the family, he helped his mom design the outside door for the holidays. Cooking and baking with the family, he was our own "Little Chef", making Ratatouille with Daddy, cookies with Mommy, and many other family members. He loved the game nights that we would have with family coming over to play UNO, Phase 10, Skip-Bo, and his favorites were Sorry & Life (He always ended up with six or more kids, lol). RJ always asked when Covid would be over so he could see family in person not in a driveway. He would get a huge smile when talking about seeing his little cousins. He loved them so very much. He decided where every plant and decoration went in his fish tank, would watch the fish and try to find the shrimp. On nice days he would play with his remote-control truck. Since he wasn't able to drive his go-kart in the last few years, this was our comprise. He would drive it thru puddles, make it flip, and of course get stuck in a bush from time to time.

Early on he was diagnosed with asthma and a learning disability, and subsequently was seen by the birth to three folks. Around three years old we discovered he was changing. He was losing weight and had joint pain which turned out to be Juvenile Rheumatoid Arthritis. From 4-7 years old we worked on maintaining and increasing range of motion. Then we discovered the hip pain was not just arthritis but hip dysplasia, which needed surgery and relocating his bed to the dining room. After many months of healing, the arthritis had taken more of his mobility. He was able to walk after some time but never walked well again. He dubbed himself "a little unsteady,” after hearing the song on the radio. During these few years, we discovered he had a common family issue - Hypothyroid. Around 9 years old he started having random severe headaches that were sometimes weeks or months apart. As time went on the headaches were accompanied by numbness and weakness; sometimes it was an arm or leg, and a few times the face. This went on for a year or so with the diagnosis being elusive, thankfully building the bond, resolve, and perseverance of his parents despite the hardship. One night in July he had a bad cold and headache. He was very sick then and said he was having a hard time breathing. So off to the hospital we went. “I’m having a hard time breathing” were the last words he spoke for about 6 months. After days of scans, tests, poking and prodding it was the spinal fluid that got passed across to the right person’s desk. The doctors were surprised also. The Tech that analyzed RJ's results happened to remember a rare disease that they studied at one point called Hashimoto’s Encephalopathy and RJ's fluid had all the signs.

We believe this was the first of many miracles shown to the world through RJ. After months of high dose steroids, home care & appointments, RJ learned to walk and talk again. We researched his rare disease and found the Mayo Clinic had seen a few dozen patients like RJ. Our week in Minnesota was fun and enlightening. The hotel had an indoor pool, splash pad, and was attached to Famous Daves BBQ. The Mayo Clinic is unlike any other hospital we have ever seen. The building was immaculate, and the care was top notch. The doctors suggested a treatment called IVIG which worked well for many years without the disastrous effects of steroids. They also suggested genetic testing which later found his last puzzle piece: Aicardi-Goutières syndrome Type VI. This syndrome answered all the remaining questions and was the cause of most of the other issues through the years. After many good years his body started changing again to a point where he was only able to stand with assistance for short periods of time but used a wheelchair for mobility. He began developing calcium deposits on his aortic valve which caused his heart to work harder, eventually needing angioplasty which relieved the pressure for about a year. While performing the angioplasty we discovered his veins were abnormally small and he would not be a candidate for a valve replacement without open heart surgery. When that year passed, we were faced with the decision of open-heart valve replacement against the doctor’s best judgment or do nothing. We couldn’t do nothing… after some conversations with the doctor he guessed we had six months to a year so we chose to do as much as we could with the rest of the time the Lord gave him.

Through his last year there was much joy and happiness, but also pain and struggle. He was admitted to the hospital three times this year - one of those times God showed us another miracle. That time the doctors were astounded! He was admitted because he was in a state that they called “catatonia”. He was sleeping all the time and was not eating. We requested a feeding tube and during that process he was not happy. After the third attempt they suggested he be sedated since he would get agitated during placement and not cooperate. The sedative didn’t work. It woke him up! He went from fast asleep for days to fully awake and doing life within minutes. The doctors all came to see him and were dumbfounded with the transformation. Praise God! Now they figured out a combination that would keep him awake. During these next few months we learned about palliative care. Regional Hospice assigned us a social worker named Nadine and Nurse Jen to set us up and help us with this journey. They are absolutely wonderful and not only provided care but worked to further fulfill RJ’s wishes. After a few more months, we reached the end of his journey. It had been just about one year of joy and love when he suffered another headache and sleepy session. This one was different though from the weeks before; he had had a lot of disappointments and started refusing food and medicine, as he acted different and lost his joy. With him in great pain, showing weakness on one side, and the looming heart condition we made the hardest decision any parent will ever make. It was time to stop asking him struggle and endure for us.

A few years ago, the wonderful Nurse Jodi nominated RJ for Make a Wish. His wish was to go to Florida. That was a very nice getaway for our family. When Covid started shutting things down, we decided to do his IVIG treatments at home. Nurse Chris was a great fit from day one. He came here mid-morning and didn’t let RJ get away with any nonsense. In this last year we were given many blessings. We were touched by the outpouring of kind words, dimes, and prayers, as well as Old Lyme holding the first and only RJ parade. We had a close friend lent us their beach house for a while, went fishing with Grandma and Grandpa, enjoyed a great journey to New Hampshire where we stayed a few nights and then headed back to the hospital, rode the Essex steam train and riverboat, journeyed to Hammonasett Beach a few times, went to see a few sunrises and many sunsets, took rides all over Connecticut, went and stayed at Camp Harkness, made RJ’s lemon cookie sprinkle ice cream with Ben & Jerry’s staff while in the hospital, Christmas light looking at, received a team RAR plushie and money gun, operated a real excavator with Larry, Christmas light looking at, got a peace tattoo like Grandpa, Christmas light looking at, sang with Red Grammer, did we mention he liked seeing Christmas lights, tubing in the backyard with Mommy, and the biggest and best Gauc my world Valentine’s day gifts and card for Mommy.

Lessons we learned are: having and doing things is not as important as sharing time together, love everyone, forgive quickly, be patient always, quickly figure out if that disagreement really matters, and that a child like RJ is not a burden…he is a gift. We have become the people we are today because of that gift.

We all know grieving and healing takes some time. Eventually we would like to carry on RJ’s legacy somehow. With all he learned and taught us, and all we learned through our life experiences together, he would want us to give that to others: to make their life easier and help them. Stay tuned for our next adventures @MakingLemenade on Facebook.

RJ is predeceased and has been greeted in Heaven by his paternal grandparents, Raymond Thomas Jr. & Cecelia Thomas; paternal aunts, Linda Thomas and Janet Thomas; and many other wonderful family members before his passing.

RJ is survived by his devoted father Raymond Thomas, III; loving mother (whom he only fired and rehired a few times) Heather Thomas; loving sister Natalie Thomas; cat Jane; dog Walle; fishes Flashette, Teenager, Suck, Babies; and the elusive shrimp. He is also survived by his maternal grandparents, Sidney & Lynn Greatorex of Cheshire, CT; Auntie Jenifer Daisomont, and her 3 children, Branndon, Laelynn & Carter of Middlefield, CT; Auntie April Spataro, her husband Paul, and their 4 children, Joely, Kayla, Jayce & Rori-Kate of Cheshire, CT; Auntie Dawn Greatorex of Torrington, CT; and many other loving cousins and family.

A few last thoughts from the life of RJ. When you are driving don’t be a “Moron!”, stick on fake mustaches are fun, doctors and teachers like fart jokes too, every time your pants are off… twerk, and in the words of Lord Dingwall from the movie Brave say “feast yer eyes!”

A graveside Memorial Service will be held on May 22, 2022 at 1pm in the afternoon at St. Laurents Cemetery located at 1315 Hanover Ave in Meriden. A reception is to directly follow the service at Faith Living Church located at 20 Grove St. in Plantsville to celebrate and honor RJ’s beautiful life. The B.C. Bailey Funeral Home of Wallingford, Connecticut is honored to have been entrusted with the arrangements and care of RJ. For directions or to leave a message of remembrance, please visit www.BaileyCares.com.

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