For those of you who don’t know, I have four cousins with Fragile X. The oldest, James, passed away suddenly on April 2 at the age of 52. There was no funeral, no obituary, he just faded quietly into everyone’s memory.

The story is told that on the day my unmarried teenage mother brought me home from the hospital, James, then 19, scooped me out of my bassinet without a second thought. My Aunt Ginny nearly had a heart attack on the spot. All James could say was “she’s crying”. From that moment on, he was my friend and protector. History repeated itself with each one of my children. I couldn’t wait for them to meet the guys, but I especially couldn’t wait to see the look of joy on James’s face as he held yet another newborn or showed my preschooler a new litter of kittens. His love of children was so pure and uncomplicated. His views weren’t contaminated by the world. He never said “is this the last one?” or “you have too many kids”. He loved each of my children simply because they were children. He loved my adopted children as much as he loved my bio kids.

My aunt raised him at a time in which families were encourged to institutionalize their special needs kiddos. She chose not to.

James rarely left the house he was born in. When hurricane Rita threatened the Texas coast, we evacuated the entire family to our small farm house. It was three days of fun for everyone. James’s biggest thrill, though, was in meeting my husband (then my fiance). Eddie had come in from being on the road for over a week and just need some rest. James wanted to see the inside of Eddie’s big rig. He loved trucks. Eddie told him if he would let him get a few hours of sleep (in the truck) then he would take James for a ride. James said ok and ran and got a lawn chair. He sat and watched Eddie’s truck for four hours. Anytime I approached him to try to get him to come inside he put his finger to his lips and whispered “shhhh, Eddie’s sleeping”. Since that trip, every time I visited the guys, James’s first words were “where’s Eddie”. I guess I lost my place as his favorite person. My husband still beams when I tell that story.

The last time I talked to James was shortly after Aunt Ginny’s death in late January. He met me at the car and said sadly “mom died”. Then a huge smile crossed his face and he said “where’s Eddie”.

Two days after James died, I was notified that I had been awarded “Outstanding Parent of the Year” for my work in advocating for blind and visually impaired children. I was asked what my motivation was. I have worked with special needs kids since I was in Jr High. I attribute that to James, David, Chris, and Dee Don.

When I was pregnant with Kaelin, the doctor told me she was at an increased risk for Down’s Syndrome. I can remember sitting at my Aunt Ginny’s table crying. I looked at her and asked “how am I going to raise a special needs child?” She looked at me and laughed and said “the same way you would have raised a normal one”. Turns out, Kae didn’t have Down’s but she did have epilepsy and a myriad of other health issues. Then Ben and Logan were born with Retinoschisis. Then we adopted three more with special needs.

I’ve heard alot of people comment on the “purpose” special needs children. James didn’t invent a cure to cancer or establish world peace, but his life served a much higher purpose. He taught me the meaning of pure, wholehearted, unconditional love. It was a lesson that has been passed on to many through me and everyone else he came in contact with.

James’s purpose in this world was to love and to teach others to love not only their fellow man, but themselves as well. Aunt Ginny and I were talking just before her death and the topic of the boys came up. I told her how much I admired her for the way she raised them. She smiled at me and said “I was lucky, my boys never quit loving me. I have always been the center of their universe. Other moms have to give that up as their kids get older. I didn’t. My boys’ bodies may have grown, but their innocence stayed intact.”

So to my dear James… I love you, I miss you and for the last time EDDIE’S AT WORK. Rest in peace my friend. You will never be forgotten.