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Spencer’s Story
"Maybe it’s my story. His version would probably be a whole lot different than mine if he could only tell it..."
I got pregnant when I was sixteen. I was a stubborn, impetuous, know it all kid going through a classic teenage rebellion scenario that included parties, boys and sex. We were living in Hawaii at the time and my mom and step dad divorced so my mother and I moved back to the Washington State. I found out after leaving and moving back to the little town I had grown up in that I was pregnant. One of my best friends already had a baby and another on the way so I had decided I was keeping my baby as well. Abortion was suggested but was never an option in my book.
I read all the baby books. I did everything right. I had prenatal care. I had an ultrasound during my pregnancy that determined he was a boy. I was on state medical insurance so because everything appeared normal I would come and go from appointments without any concern. I remember feeling super sick for about a week during the early part of my pregnancy. I just assumed it was morning sickness and didn’t think much more about it at the time. Part of me believes now that maybe that’s when I contracted CMV. There’s no way of knowing when I suppose. It’s just the only thing that seemed out of the ordinary about my pregnancy though feeling icky and tossing your cookies is normal for a lot of people’s pregnancy.
Spencer was born on July 8, 1991. He was full term and weighed 9 lbs. 4oz. He scored a 9 on his Apgar test and seemed perfectly healthy. There was no mention of the size of his head or organs at the hospital. Again, this was a little tiny town and my delivering doctor was my General Practitioner that had been my doctor growing up. We went home less than twenty four hours later. He did everything a new baby was supposed to do. He ate, pooped, slept and cried. Normal. He was seen by the doc for his follow up visits and shots without anything out of the ordinary coming up or being mentioned. When Spencer was pushing 4 months old I began to be concerned because he wasn’t doing what the baby books said he should be doing. I took him to the doctor and was told, “No, everything is fine. He’ll catch up.” At six months, again, he wasn’t rolling over; he wasn’t supporting himself or attempting to sit up. Again, we went to the doctor, and he referred us to a pediatrician thus beginning our CMV adventure. Only, we wouldn’t have a diagnosis for another year or more.
Between waiting for appointments and referrals and seeing a neurologist to only be referred to another...a year or so passed. They confirmed he had and diagnosed him with Congenital Cytomegalovirus. They made referrals to therapists and my world was turned upside down. I knew I could be a teen mom. I never expected to have to be a teen mom of a child with severe disabilities.
They said he wouldn’t walk. They said he was deaf. They said a lot of things. I spent the next couple years going from appointment to appointment trying to find some sort of help for my child; looking for someone or something that could make a difference. That someone ended up being my mother. In the beginning, of course, she wasn’t about to save me from my teenage pregnancy crisis but she eventually decided this was more than I could handle and she took guardianship of my son. We were surviving and making progress but she stepped in as this amazing advocate for this child and did more for him at the time than I was able.
Spencer’s overall health wasn’t bad. He had side effects from the CMV of course but his general health was good compared to stories of some kids I’ve read. He was growing steadily though always small for his age, he was strong and fortunately, STUBBORN! He started scooting around like a worm, and then eventually sat up. At about three years old, he could pull himself to stand and started cruising around the furniture. He was given a wheelchair but he preferred for other people to sit in it while he pushed them around. He started walking independently at about age five. We tried hearing aids for him at first but they didn’t seem to benefit him much. One doctor would say he was completely deaf but I’d hear him respond to sounds. Another then said, he hears, he just hears everything like a really bad radio station that’s garbled and muffled. He has no audible speech but he can tell stories full of excitement and emotion that we’ll never understand. The most frustrating thing about Spencer is his excessive drooling. Unfortunately, this is a huge turn off for the general public as well. He’s always got a bandana on and will try to keep himself cleaned up if you remind him.
We tried mainstreaming Spencer in public school but they just didn’t have an interest in making a difference for this child. My mom enrolled him in the Arizona School for the Deaf and Blind in Tucson and he’s spent most of his adolescence and all of his teen years as a resident student there coming home on extended breaks and such. It has done wonders for him to be in an environment where they were better equipped to deal with special needs kids. Some of the students there are highly functioning and just hearing impaired while there are others confined to their chairs with little to no functioning. So, I would say Spencer is a good case scenario for what could happen as a result of cCMV. He can sign basic signs and understands many others. He has had jobs at school, played baseball and was even prom king. He is due to graduate just next week. He can spend another year at school after his graduation and then it will be time to look at other options for Spencer.
Lately, it seems he has been suffering seizures more so than he ever has before. They’ve never been much of an issue but over the course of the last couple years it seems he’s had more spells where he just completely phases out for a bit and isn’t “there.” It doesn’t seem to slow or affect his breathing to a point of concern but maybe others that have gone through the same will have insight for us.
Spencer has an amazing soul. He always has a smile to share and is completely selfless (Except when it comes to video games.)
- Shared by his mother, Bobbi-Jo