Stephanie has a Master’s degree in Early Childhood Education from Southern Illinois University-Carbondale. She has always had a passion for young children and treating them with respect. She has worked with many young children and their families. She was also able to present at early childhood professional conferences and was able to provide education for college students.
She has severe Cerebral Palsy. Many people thought that she would never amount to much due to her severe disability but she has been able to prove them wrong. She taught herself to type with her nose at just nine-years-old. She types everything with her nose.
She published her first book in 2014 to teach people how to gently parent without spanking or punishing the children. Unfortunately, the book was published by a publisher that is now no longer in existence. She hopes to eventually get the book redone and published on Amazon. She also wrote a children’s book about her life with Cerebral Palsy (CP). It took years for her to find the right illustrator to illustrate her story. Unfortunately, it was during the pandemic when her book was finally illustrated. Since she had written it way before Covid hit, she recently had to add a new page to the book to explain that she can no longer do the things she used to do. Now she’s trying to figure out when the right time will be to release it since she wants so much to do public book signings. However, with her severe CP and asthma, she has to be extremely careful about what they do in public places. Her husband is her 24/7 caregiver and he is at high risk for Covid complications so they have to control everything in order to avoid getting infected with it.
It took over four years for her to finally find out about the Readimask. Her husband tried everything to keep a mask on her face but due to her involuntary movements and spasms, the minute she would move or try to talk, the mask would fall down. It was terrifying for them to not be able to have her masked. Therefore, she couldn’t be in public places unless they made it extremely safe. Now she has a little more freedom but she is terrified of being infected with Covid especially as she has watched all of the mask mandates lifted. Especially in medical facilities where people are at their most vulnerable. It’s been truly terrifying, maddening, painful, and heartbreaking for her to sit back and watch everyone stop masking and live their normal lives like Covid isn’t a threat anymore. She has been able to get all of the vaccines but she can’t swallow Paxlovid due to her swallowing issues. It can’t be crushed or broken up. Even though a few healthcare professionals have said that they would rather her take the Paxlovid because they think the benefits would outweigh the risk, but since there’s no research on the effectiveness of it being crushed, she is not comfortable with doing that with Paxlovid.
She’s had to overcome so many obstacles in her life. With Covid she has been very distressed by the way that society treats people with disabilities and other vulnerable people. The amount of ableism is staggering. She never thought she would be dealing with such ableism and disregard for the lives of others. She has had to become an advocate for Covid policies and change. But she often feels unheard. At the height of the pandemic, six out of every ten people with disabilities died from Covid. Some of them were put in hospice care because the hospitals were overwhelmed with patients and people with disabilities required extra care. On top of this, some people in the medical field didn’t think that the disabled had a good enough "quality of life" in order to provide the necessary care that they needed and deserved! Nowadays, people with disabilities are still twice as likely to be hospitalized and even readmitted to the hospital for Covid. The disabled are also more likely to develop Long Covid. And the disabled are more likely to die from Covid than the rest of the population depending upon the disability. Yet, the disabled continue to largely be ignored. With Cerebral Palsy, the brain is damaged either before, during, and after birth. The brain is unable to send the correct signal to the body and so people like Stephanie can’t control their muscles. This affects the diaphragm as well, therefore, making it harder for people with CP, especially the more severe cases, to effectively cough. When Stephanie is sick with a respiratory infection, she usually ends up on antibiotics. This, on top of her asthma, makes her immunocompromised.
In conclusion, Stephanie has written a number of blog posts about the importance of also protecting the children. She is heartbroken that parents and teachers are abandoning their children by not keeping them in masks, using air cleaners to keep the viral loads lower in the schools, and also not getting the children vaccinated. She is grateful to have found the Covid cautious community and runs a group on Facebook with her friend to provide support and encouragement for people who are still trying to stay safe and do the right things. She hopes that they will eventually find a way to get a vaccine that will prevent transmission and infection from Covid. Even then, she will now probably mask in certain circumstances and times of the year when respiratory infections are high. For now, she and her husband will remain masked all the time in public places and stay vaccinated as often as possible.
