GROWING GOLDEN: Caring Comes Full Circle
Often adult children experience a turn-around of roles and become the chief caregivers of their parents as life dictates changes, challenges, and issues. However, it is uncommon for an adult with SWS to experience this role reversal. As adults with SWS become independent and assume typical responsibilities, they also may develop a special empathy for the mother or father who saw them through the medical and emotional turmoil of their growing up with SWS.
Reprinted from 2020 Branching Out Magazine.
My name is Jennifer Berg and I have Sturge-Weber Syndrome, but that is not who I am. I have had a total of 71 surgeries, 2 brain surgeries, 6 eye surgeries, wearing a prosthetic eye, mouth surgery, and many face surgeries. My mom has been through all of it with me. She has always supported and taken great care of me. That has made us close.
In high school I received my degree as a certified CNA, then after high school, I obtained my AA degree. In 2014 I started going to the University of South Florida. But shortly thereafter, my mom got very ill. She was diagnosed with cancer, had surgery, and was cleared, but then 5 months later it came back, stage 4, and after that, it came back two more times.
During all this she was in bad shape and could not do anything, even walking was difficult without my help. So, I quit school and became her sole caregiver (role reversal). I felt that with all the medical events I had been through and watching her take care of me, it was only natural that I take care of her. It was an easy decision. Once she got better (she is now cancer-free) I returned to school. I finally obtained my Bachelor of Science and Mathematics in Psychology from the University of South Florida.
I am aware that parents of children with medical problems have a life-long job, and most of them are great at it. As a parent, you know your child better than anyone. Don’t always assume that doctors know everything and if you feel something is wrong or your child or teen feels something is just not right, LISTEN. Sometimes you might just have to change doctors to get the right answers and treatments. Also, always let your kids try things that interest them, in school or out, they just might surprise you. I want to put all my experiences to good use working with children, especially those with disabilities, mental or physical. I know I can relate to their problems and will be able to communicate and understand what they are going through.
Anne Fischer, PH.D., pictured here with Jen, is Jen’s favorite professor.
Mom's Two Cents
Roberta's Story: Being the mother of someone born with Sturge-Weber has not been easy. Jennifer is an adult now and graduated from USF with a bachelor’s degree in mathematics & science in psychology. I am so proud of her.
All through school, her teachers put her down and kept telling her she would never really amount to anything. But she has always been determined and strong-willed. Plus, I have always told her that she can be and do whatever she chooses. She arrived 2 weeks early and only weighed 2 lbs,13 oz. Her first surgery was at 3 months of age for glaucoma.
Her second was at 7 months for the same thing. Also, back then they didn’t know anything about Sturge-Weber, at least down here they didn’t. I even had one doctor who wanted to treat her ask me how to spell it. So much for that doctor. When she was 23 months old, she had her first seizure and it lasted for 1 hour and 45 minutes. The doctors even came out to me and said she was going to die. Little did they know what a fighter she was and still is.
I have been a single mom to Jennifer since she was three months old. It has never been easy, but I would not change the experiences and challenges we have faced over the years. As of this date, she has had 71 surgeries, including 2 brain surgeries. Just watching her grow and overcome all the obstacles has been painful and yet rewarding.
When she was in high school, she obtained her CNA certificate, and was in the marching band (the drum line), karate, police, and sheriff’s cadets, she was on her bowling team for 11 years. Also, starting in elementary school, she was counseling other students. Teachers called her out of class to come to their room and help with someone. She always came through and the student was calmer and more focused after having been with her.
With all the medical events she has been through, she has learned so much. A few years ago, I got extremely ill with cancer that kept coming back, Jennifer dropped out of school and became my fulltime caregiver and advocate. She gave up everything to take care of me and get me back to being a real person, even when the doctors had given up on me. I also found out that she is quite a good cook. I am so blessed to have her in my life, and I know that it was mostly because of her and all the prayers.
It took over two years (and no complaining from Jen) but we got through it. I guess you could say we came full circle, I took care of her through all her surgeries, hospital stays, and all the ups and downs of growing up, and in turn, when I needed her, she was right there taking care of me, no questions asked. I feel very blessed to have such a remarkable young lady in my life.
