Brain Training for our Emergency Backup Sweetie
My family consists of me, my Big Sweetie, my Little Sweetie, my Emergency Backup Sweetie, and The Boy. When Emergency Backup Sweetie (EBS) was born, she had something just slightly wrong with her brain. It was a tiny something, with how she moved her eyeballs, and it freaked the nurses out, but after three days in the NICU, the best we could get out of all those experts and all those computers and all those nurses was that "she just liked doing it." So we took her home, and everything seemed fine.
Fast forward a few years, and EBS was pushed off a playground playset backwards and landed on her head. After a frantic ride to the hospital and many hours of testing, they ruled out all the worst; it was just a concussion. Again, we were relieved that it wasn't as bad as it seemed, and everything seemed fine.
Everything isn't fine. We don't know if it started with the playground accident or something she was born with or something in between, but at the age of 14 EBS now has Postural Orthostatic Tachycardia Syndrome (POTS), a blood pressure issue that puts her at a greater risk of falling and hurting herself. By the time we realized this, she had had a total of five concussions in a two year span. Because of these accumulated concussions, EBS has a visual "convergence insufficiency," (CI) which means her brain has trouble making sense of what her eyes are seeing.
Between the POTS, the CI, and her ADHD, EBS isn't able to function in a school setting. Her 504 plan is a continuously moving target as we uncover the extent of her disabilities. ADHD is manageable, and she's fighting her POTS with physical therapy, compression stockings, leg braces, and a high-salt diet, but some things just can't be bootstrapped. The vision therapy to correct her CI is going to cost $11,800. This will drastically reduce her risk of falls and eliminate the double vision and afterimages that prevent her from reading above a 1st grade level.
Let's be clear, EBS is a bright young woman despite her challenges. She loves the outdoors, and her summer camp singled her out as a leader among the youth. You can see her on TikTok, Tikking her Tok and being her authentically artistic and funny self, but she'd be a lot better leader, artist, and person if she can keep to a schedule, drive a car, and balance a checkbook, and none of those are going to happen unless she gets this fixed. Despite all her best efforts, she may have to repeat a year of school, but with your help, she'll be able to thrive academically, and even go to college.
Big Sweetie and I appreciate all considerations on behalf of our daughter. Even if you can't donate, please share the link on any social media, and EBS is always looking for new followers on TikTok. Together, we can help make Emergency Backup Sweetie the best that she can be, because there are a lot of emergencies out there that need backing up.
