My 28th year around the sun was eventful, to say the least. I never expected it to be my most difficult year yet. It has also been a year of teaching and learning. It recently dawned on me why my life has been moving in the direction it has been.
Since I was in middle school, I wanted to be a musician or a music teacher. When I went to college after a successful high school music career, I thought I would make a good private voice teacher or a professor at a university, teaching voice and vocal pedagogy. I auditioned at a few graduate schools during my senior year at Millersville, deferring an acceptance from Ball State University in Indiana, and being accepted into Peabody Conservatory at the Johns Hopkins School of Music. Peabody was my dream school, I fell in love with it instantly upon my first visit there and practiced every single day until my audition later that year. When I received my acceptance letter in the mail, I felt so happy. I had worked for months to receive that letter, so when I saw how much the graduate degree was going to cost me, I panicked.
$55,000 a semester, for 4 semesters. Without any scholarships or a TA position, there’s no way that was happening.
When I sent in my “decline” response to the admission office, I cried for days. I had given up my entire senior year of fun, friends and parties, so I could study and prepare for grad school. I began to wonder what my future was going to be like. Was I a failure? I wasn’t really good at anything but music. I decided to work for a year, post undergrad and save up enough money to afford my masters degree. I was determined to further my studies and become a voice professor.
Finding a job with a bachelors degree in music was difficult. Luckily I had experience working with children through my work at the Lancaster Rec, so I was able to apply for jobs that involved working directly with children- including a TSS position. I applied to several agencies locally, in hopes that I could find a TSS job with benefits that could pay enough for me to afford grad school. I stumbled upon Philhaven’s Behavioral Health Rehabilitation Services (BHRS) on a whim and was directed to the new ABA services through CADD. Because I had experience working with children with disabilities through the summer camp I worked at, I was able to interview for the new program that CADD had started for autistic children. I interviewed and was soon offered a job as a TSS in the program.
My goal was to work as a TSS for a year, then go to grad school to follow my career plan. I instantly fell in love with the job. I liked feeling like I made a difference in someone’s life and seeing the progress that my clients made. The job taught me a LOT about Autism and Developmental Disabilities and taught me a lot of patience and understanding. Little did I know, I would be needing that patience for my own child later down the road.
When I got pregnant with Roslynn, I decided to leave my TSS position and take a job in the front office of CADD. I miss the one-on-one client interaction and support, but my job in the office has given me many opportunities I don’t think I would have had as a TSS. I learned about resources available to clients, different providers and I had immediate access to the staff at CADD, who truly are experts in this field. Everything I would need three years later, was right there in front of me.
I learned how to talk to insurance companies, how to fight and advocate for what our clients needed at CADD, which later transpired into me advocating for my own son. There are several moments throughout my 8 hour work day that I talk to parents that have gone through, or are going through the same things my family is. It is so incredibly difficult for me to not shout from my desk “I know exactly how you’re feeling!” I have not left CADD to attend grad school for a reason- I was given this opportunity to work at this organization because God wanted me to learn and use my knowledge to educate and advocate.
Flash forward to present time and why this all matters….
We received the images and report from Greyson’s MRI about two weeks ago. I haven’t posted anything about it because I needed time to digest everything and work through the increased problematic behaviors that Greyson has been having. We called Dr. Comi early last week because of a dramatic increase in Greyson’s crying and irritability. We were advised to reduce his trileptal because it could be causing the irritability. Almost immediately, we saw even more behaviors: aggression, restlessness, nonstop crying and screaming. We couldn’t handle it any longer. We called Dr. Comi and had the medicine increased again, which has been helping with G’s irritability but is making him extremely tired.
The MRI showed no evidence of brain involvement common in Sturge Weber syndrome, which is great. However, it did show mild to moderate PVL- periventricular leukomalacia. PVL is defined as:
Periventricular leukomalacia (PVL) is a form of white-matter brain injury, characterized by the necrosis of white matter near the lateral ventricles.
PVL is commonly found in infants that experienced brain injury at birth, such as lack of oxygen or other fetal distress. The white matter spots were seen more on this MRI than the scan we had in March, which could mean that the white matter is spreading, or the imaging done at Hopkins was more advanced than Hershey. Dr. Comi proceeded to inform me that she would suggest we see a genetic counselor to complete a full genetic testing array, to hopefully see what the underlying cause of G’s encephalopathy and epilepsy is. Until we find a genetic specialist in network with our insurance, we wait to see how G handles his increased dose of meds and continue his routines.
With all of this said and done, I am a huge fan of birthday wishes. I haven’t had a cake or blown out any candles, but my wish for this golden birthday is that my 29th year brings answers and progress. I wish for strength- for myself, for Derek and Roslynn, our extended families and for Greyson. I hope we receive some good news and see progress with Greyson’s treatment and I wish for happiness and health.
Goodness, you are tough and you guys are amazing parents. Thank you for letting everyone into your story, I’ve really enjoyed reading it. I hope you get some more answers soon. (And happy birthday!)