Dear Ravi,
This was the writing prompt for today. I can answer this easily, caring for you was my dream job. You had PCAs since you were four years old. Some of them were wonderful and became a part of our family for years. Others I quickly fired, such as the one that emptied our liquor cabinet. Daddy drinks rarely and I do not drink at all. One day when reaching for some cooking sherry Daddy noticed that almost all of the bottles of alcohol in our cabinet were empty! We had three different PCAs at the time, and I trusted two of them with my life. The culprit was obvious to us and he was quickly dispatched.
When you were fifteen you developed epilepsy. The nurse in the ER warned me that I would never sleep the same again, that I would always sleep with one ear open. She was entirely correct. Even now, I still sleep with one ear open. It’s a special needs mommy thing. At this time, I realized that I could not work outside of the home, because I had to be ready at any moment to come get you from school or an activity in case you had a seizure. I dropped my tutoring obligations and my nanny job and became your full time PCA. As to your epilepsy, you were trialed on many different medications. At one point, you had a beautiful run of 18 months seizure free. That was amazing. Sadly, after that the seizures became much more common. After you were diagnosed with osteosarcoma your seizures became so much worse. My theory was that your stress level from being in the hospital was super high, your body was very fragile, and this caused you to have more frequent and severe seizures. Your doctors admitted that my theory might be correct, but they did not have a lot of data about treatment resistance epilepsy and chemotherapy.
Boo, I loved being your PCA. We could choose to do what we pleased with our days when you were not in school or when we were shut down during Covid. We had our own little bubble of friends and our own fun activities we could do on our own. You did not like online school so Alissa and I took over teaching you everything we could about the outside world. We followed your interests, and even when our world seemed very small, you were happy and thriving.
After your osteosarcoma diagnosis, carrying for you was a 24/7 kind of job, but I still loved it. Your daddy and I were perpetually exhausted, but it did not matter. You were the center of our existence. Never have you been more loved. I have had great jobs and terrible jobs since 1989, but I never had a job like I had when I was your caretaker. Though it is often painful to think back on the last 22 years of your life, you, me, and daddy were one connected unit. We laughed together and cried together. And, at the very end we said goodbye to you as your soul slipped away to freedom.
I am working part time at most right now. I don’t want to work full time. I tried it less than 8 weeks after we lost you and it nearly destroyed me. I still love being a PCA and caretaking, but it is much less of an emotional commitment. I can go home at the end of the day and turn my mind to other things. Ravi, you were my dream job, the best job ever. Please know that. You appear in my dreams often. Sometimes, I wake up smiling, other times I wake up in tears. You will never be forgotten. Thank you for giving me the opportunity to help you, love you, care for you. Love you to the moon and back. Mom.
Harriet's Hedgehogs and Autism Advocacy 