Aug 14

Aug 14 Home away from home

July 26th, 2019 was our last in-patient admission. September 17th, 2019 was her last clinic visit. At the time, we had no idea that it would be nearly a year before we stepped inside a hospital again. Before Adelaide, hospitals made me anxious: the smells, bright lights, winding hallways - it was all so foreign and unsettling. Over the course of Adelaide’s life we spent time at 11 hospitals - that I can think of off the top of my head. I’m not sure when the shift occurred but at some point the hospital life routines just became normal. Rush University Medical Center, where Adelaide received a majority of her care, became our home away from home the last two years of her life. The cafe workers and parking attendants were familiar, the doctors, nurses and techs like family. As I wrote in That Hospital Life, “the fact that these people see me without make-up, hair a mess and no bra on when they wake us up at 6am for a blood draw also progresses the relationship rather quickly.”

Now, it is very easy to romanticize past experiences. I think fondly of our time in the hospital because of the incredible people who cared for our family. To be clear, we never wanted to be there. If we were in-patient it was because Adelaide was requiring additional testing or was too unstable to be at home. Our family was often separated during these visits and too many admissions fell over holidays. But it was all part of the Adelaide experience: I cannot think of her life and caring for her without also remembering our all to frequent time in the hospital.

We had wanted desperately to be able to say thank you and a proper goodbye to the hospital team that most often cared for Adelaide, but COVID took that opportunity away from us. However, with our annual family vacation on Lake Michigan starting Saturday, it seemed silly to be driving all the way from New Jersey and not swing by Chicago in advance for a few quick hellos. When we reached our fundraising goal for the Adelaide Cervantes PICU Family Lounge earlier this week I knew we needed to find a way to (safely) sneak back in to the hospital to record a thank you video and take some photos of the existing lounge before the renovations took place.

Quick pause here to thank everyone who so generously donated to make this renovation a reality. I cannot express how having a nice shower, cozy furniture and a relaxing space will make a family’s difficult time in the PICU just a bit more comfortable. Being provided with the opportunity to give back to a hospital and community that gave us so much AND to leave a legacy for Adelaide has been a dream come true.

Adelaide’s last hospital admission July 2019

When we arrived, out of habit, Miguel nearly pulled into the valet instead of the parking garage. Lugging Adelaide and her bags of equipment was much easier with a curbside drop-off but not one we required this time. As we walked across the glass enclosed skyway from the garage to the lobby my eyes welled with tears. But just as quickly as my emotions had risen inside of me they abated and were replaced by a steady calm. I don’t remember the last time I felt that close to Adelaide. But she was there in each pair of smizing eyes, sitting over a mask, that welcomed us back.

We weren’t able to stay long and had limited access to the facilities, trying to remain as respectful of Rush’s COVID policies as possible. We weren’t able to greet or thank the nurses we cherished but sent messages of our gratitude along with the admins that made our visit possible. We weren’t able to hug Adelaide’s epileptologist and his nurse as I so desperately wished to, but we were able to say hello, catch up a bit and share memories.

Just being back in the hospital filled with people dedicated to the care of patients like Adelaide brought me so much peace. That we were back to visit the space that would soon be the Adelaide Cervantes PICU Family Lounge lessened the weight of my grief just a bit. Adelaide’s life and death will not have been in vain and this space will be just the first of many ways that is evident. So, thank you, for bringing this mama a bit of joy… and when this pandemic is finally over, don’t be surprised if you find me in a random hospital lobby just taking it all in.