When a Hospital Feels Like Home

When my son got his unrelated cord blood transplant, I lived in the hospital with him for two long months. For those months the small room with a crib, a couch that unfolded into a bed, a bathroom, a small closet and thankfully a huge window that looked out onto the front entrance of the hospital was our “home.” The routine of the oncology floor became our routine:  4 a.m. labs, 10 a.m. rounds with doctors, nurses and fellows, saving diapers to be weighed, calling three times a day for meals. We also embraced the hospital routines: bagels on the 8th floor at 10 a.m. on Mondays, cookies on the 8th floor on Wednesday, spirituality group on Wednesdays that came with pizza and two times a month on Thursdays art therapy group. The cycle of these routines got me through each day and helped me differentiate one day from another.

The time I spent was not unique or impressive. Some patients spend much longer while others much shorter. Regardless of the time spent, the hospital became another “home.” About once or twice a year my son gets admitted to the hospital for anywhere from one to seven nights. Every time I “move” back into the hospital with my son the routine and familiarity of it all covers me like a warm blanket. I know where to get extra blankets, when to miss the crowd in the cafeteria, and where to order the best cookies for delivery. In a weird way there is something comforting about being admitted into the hospital. While usually I have something new to fear and worry about and there are usually questions we are trying to find answers to, the people, the routine, the walls are all so familiar. I easily fall back into my “routines” when inpatient, as does my son.

You would think having to balance everything at home while being in the hospital would be more stressful and in some ways it is. I have to manage my life from another state without being there. I have to rely on family and friends to pick up the slack. I sometimes only have the clothes on my back to sleep in and live in. But at the same time I get to breathe a little. I don’t have to prep the meds or get them for Benji, someone else does. I don’t have to cook or plan a meal, I just have to call downstairs. Someone else cleans the dishes and does the wash. I can have as much help as I need. I get to sit and just be present in the moment in a way that I can’t at home. It isn’t relaxing in the usual sense of the word because I still have everything else in my life that I am managing from afar, but I get to take a break from watching, worrying and overseeing everything when it comes to my son. I have a nurse who takes over that job for me and lets me just be. There is a weird prolonged state of mindfulness and being in the present that being in the hospital is for me at this point of our journey. It is not someplace I want to be, but I am OK being there.

I am not saying that I want my son to be admitted in the hospital or that I feel more at home at the hospital than I do in my house. As a medical mom who has spent a ton of time in the hospital there is a level of comfort that I get from being there. I joke with some of the nurses that my son gets admitted yearly simply because he misses the nurses and wants to see them. We both have our routines when we are inpatient and there is comfort for both of us in that. We both find something reassuring and comforting about being in the hospital and while we do not want to be there, we do not feel out of place or unwelcome. The hospital and prolonged stays there are not “new” and “scary” they just are. They are a part of our journey and our life.

I think that is one of the saddest things that we have come to have to accept on this journey … that we are as “comfortable” inpatient at the hospital as we can be and that it is another “home” in many ways.