Our story begins in the summer of 2022. I was going through my crap at the time, trying to figure out Giant Eagle and questioning why I started my journey when I wasn’t getting much support. We attended the annual picnic at the farm and I enjoyed myself. My cousins showed their support for me as I broke down about what I was going through at the time, including the fact that I was shunned by some people for the changes that I made.
But this isn’t about the picnic nor is it that moment where my cousin and I both cried over how I was struggling in my journey, before she gave me some very kind words. This is about my cousin. Benny wasn’t feeling like his usual self and it would all come to light a month later when he started having seizures. My Mom and aunt went to Conemaugh Hospital before Benny would be flown to Children’s Hospital in Pittsburgh. That stay would last two weeks and he would get many visitors along the way.
You see, Benny has a skin condition called Hidradenitis Suppurativa, or HS. It’s a chronic inflammatory condition that causes painful cysts under the skin, often in areas where skin touches skin (example, underarms and groin).
He came home and things were back to normal, for now. Fall arrived and he went back to school. We enjoyed Columbus Day weekend with Annabelle’s birthday at Twin Lakes and the family reunion. The holidays came and we broke tradition by hosting Thanksgiving at our house. It was one of the best holidays we had in recent memory. But prior to Christmas, Ben was in pain and could hardly move. Thus, he and his mom would be back at Children’s. We were praying for a Christmas miracle.
We got one as they came home (well, to the Holiday Inn Express) on Christmas Eve. It was a cold day with temperatures in the single digits, though not as bad as the day before. We sat with him in his room and watched Christmas specials from yesteryear. The next day, he and his mom celebrated Christmas with us.
But the euphoria would be short-lived as Ben went back to the hospital in February and would stay there through May. Now it was really time to nip this problem in the bud, once and for all.
I came to Children’s whenever I could. Mom did most of the visits and sometimes sat with Ben all day when his mom went home to get stuff. While a hospital room isn’t the nicest place to stay, Ben’s room overlooked the city skyline and made for some great views.
I visited on Mother’s Day and later that week to take Aunt Sue to Phipps to see the Billy Porter exhibit. We drove around Oakland and ate dinner at Primanti’s near the hospital. Glad I made that visit because the next week Benny came home.
He was able to enjoy the summer and part of the fall, including Annabelle’s Harry Potter themed birthday party and the Gaffron family reunion before going back to Children’s at the end of October. It looks like he’ll be there through the holidays. I’m going to visit them this Sunday and wish them a happy holiday.
Thursday night was the Free Care Telethon that raises money for Children’s Hospital, and Benny was on TV. How about that? Our little guy is a celebrity.
He’s been through a lot this year and hopefully the worst will be over soon and he’ll be back home and doing what he enjoys.
Stylish 🍒 