These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation.
My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.
Logan has had these strange bumps on the side of his face, just below the ear lobe. They felt like pebbles under the surface of his skin. They seemed to develop after he fell a few years ago. Because of the pain they caused Logan whenever we touch that area, we finally took him to a plastic surgeon for a consultation. We learned that they were most likely not scar tissue from the fall. It was in fact something else, fairly common, but needed to be removed and sent to pathology. The doctor assured us that it would be benign. At the appointment, Logan asked how they would remove the bumps. The doctor went into a fairly detailed explanation that included the words knife and cutting. Logan freaked out. And Logan does freak-out really well. I quickly gave the doctor the evil eye and told Logan they would suck it out of his ear. He stopped crying immediately, I think he was trying to imagine how that would work. Then the doctor gave me the evil eye. I was later admonished for my white
Ben has had a rough couple of weeks between his finger getting caught on something at school causing much commotion in his classroom, a fall at his PT therapy session leading to a black eye, scratches on his head and chin from some other mishaps and ending this past Friday with a trip to the ER in NY when Ben fell off the sofa at his grandpa's house and cut open his already beat up chin. I may have mentioned before that I do not like blood. I need to clarify - I steer clear of the red stuff when it is outside the body. At a neighborhood Halloween party, I heard crying. I ran to see if it was Sean, my youngest. I was correct, it was his cries I heard. As soon as I saw the blood all over my son's mouth, I took an about-face and headed for another room in the house, letting my husband assess the damage. Luckily, Ryan is the only one who saw me avoid my screaming bleeding child. When Ben got hurt in NY, I was still in bed. Ryan called up to me for help. I assumed it was a bathr
Free valet parking, a colorful gown to wear, Bob to the Rescue on the TV, warm towels for the body and drugs to numb the pain - all at the special emergency room for children. It all started on Saturday morning. As we walked into the gym at the YMCA, Ben abruptly sat down to watch a volleyball match. Not wanting to be late for swim lessons, I hurried a reluctant Ben to the pool. He'd never seen a volleyball match, let alone one played by teenage girls in very short shorts. Ben had a fantastic swim lesson - the instructor let him maneuver along the edge of the pool alone using his arms to reach the steps, about 5-6 feet away. This was hard work for him and a big accomplishment. The volleyball match was still underway as we left the pool area with me holding Ben's hands. He led me to the game, let go, plopped down and started crawling quickly to the bleachers. I told him he had 5 minutes to watch. Ben tried to climb up on a random man's pants to get a better look. I
Ben awaiting his ABR. Based on an ABR ( Auditory Brainstem Response ) Ben had when he was 2 1/2 years old, we were told that his hearing in his right ear was poor - he could not hear anything below 90 decibels . Regular conversation is at 55 decibels. With good hearing in his left ear, he could compensate. When I found the new ear, nose and throat doctor's office last summer, I decided to retest Ben's hearing. After initial testing, it seemed that Ben's equipment - ear drums, etc. - all worked well. A sound booth test is hard to do with Ben because he is not able to speak or point his answer. Another ABR was the only alternative. Ben's ABR was done yesterday. In order for the audiologist to perform the test in her office, Ben had to be sleep deprived the night before so that he would quickly fall asleep with a mild sedative. My plan involved keeping Ben up until 1am and waking him at 6am. My friend and I brought Ben to a 9:30pm showing of Avatar , and kept him aw
Last Tuesday, I spoke with two friends who I do not see on a regular basis. One friend shared a dream she had about Ben two months ago. We were all in front of the YMCA walking to our cars, ready to go down a staircase. My friend gave her hand to Ben to help him walk. In the dream, she said, he gave her this funny look, like, "I don't need your help." Ben was walking by himself, a bit hunched over, but walking on his own. I have had many friends and family tell me about this type of a dream, where Ben is walking or talking. It always makes me smile to think that people worry about Ben like we do, keep him in their thoughts and pray for his well-being. The other friend lives on the opposite side of the city, and we have not seen each other in a few years. She left a long message about a child she had heard about that had similar traits as Ben, and they had found something that helped the child. She wanted to send me the article about it. I have to admit, when I got the m
Ben is home and recovering very well from his surgery on Friday. I am physically tired and emotionally drained from the entire experience. I think he feels better than I do from the amount of energy he seems to possess. Thank you for all your well wishes, prayers and good thoughts - Ben received all of them and perhaps that is why he is ready to party while we are ready for sleep. Good night!
After two brain scans, genetic testing, three neurologists, a developmental pediatrician and Duke Children’s Hospital, we gave up on the idea of a label for Ben's disability. About 25% of children with special needs supposedly have a “non-diagnosis.” We were fairly comfortable in this category. Plus the searching was getting expensive, disappointing and tiring. On our fourth neurologist, we hit the jackpot. I brought Ben’s 2 MRI scans with me. Before seeing us, the doctor reviewed them. The neurologist walked into the room with a few brochures and said, “Ben has hypoplasia of the corpus callosum.” The doctor explained about the organizations involved in research and support, and she suggested we sign Ben up for the study in California. I read the brochures and sure enough, Ben fit. Hypoplasia of the Corpus Callosum in plain language means the bundle of 200,000 nerves that connects your left and right brain (corpus callosum) is thin (hypoplasia), about 60%. For some reason the