My husband and I have a unique situation with our family. I am a carrier of a syndrome called Fragile X, referring to the X chromosome. Fragile X is the leading genetic cause of mental retardation. I didn’t know I was a carrier when my husband and I had two beautiful sons. They were diagnosed in early childhood. Robby, our eldest, is now twenty five. He was also born with a major birth defect affecting his kidneys and urinary tract. In spite of giving him one of my kidneys, he is having to receive dialysis treatments. My younger son Joshua is big and healthy, but along with being MR he is autistic. Robby and Joshua are unique in their behaviors, but very typical in other ways.
Sibling rivalry is alive and well in our house. They bicker over possessions. Robby is always telling Joshua to “shut up” even though Joshua is classified in school as non-verbal. Robby plays the drums and loves that Tom Hanks movie “That Thing You Do.” Joshua loves to take Robby’s drum sticks. Robby is fluid restricted because of renal failure and really resents the fact that Joshua can drink as much as he wants. Robby is only a little over five feet, but his personality and fighting spirit make him seem taller. He is stocky with dark brown hair, long eyelashes and handsome chiseled features. Joshua is over six feet and weighs over two hundred pounds, but he is a big teddy bear. He has light brown hair that is a mass of curls, prominent dimples and a Mediterranean, Greek statue appearance. Joshua pretty much tolerates his older, yet smaller, brother’s bullying. Sometimes it’s easy to see when Joshua has had enough when his face gets all red and he makes loud swishing noises with his mouth. Test results say that Robby’s cognitive ability is around a five year old and Joshua is like a three year old, but when you live with these guys and really know their level of comprehension they exceed test results in many ways.
Now I can get to the reason for this post. For this past week I’ve been staying with my son in the hospital because he has pneumonia. Even now as I write this he is receiving dialysis in the hospital and I am at his bedside. When my husband brought Joshua to see Robby earlier this week they were so sweet to each other. When the visit was over Robby blew kisses to Joshua and said “ bye Joshie, I’m going to miss you. I love you.” Robby had been feeling so rotten the entire day, but he mustered the strength and thoughtfulness to send Joshua off with a positive salutation. My eyes welled up because Robby looked so little and weak in the bed, but so mature and loving. My husband also reported to me that Joshua has been watching “That Thing You Do”, Robby's favorite movie, and he took Robby’s pillows off his bed and put them on his own and laid down with them.
There may be many barriers that obstruct their communication, but as "special" brothers, there is no barrier to love.