Lobby Love
Even a ten minute visit from a friend or family member can help shift perspective while in the PICU.
While some visits to the hospital later become a blur or mix together with other visits, time in the PICU can feel the opposite. Minutes and hours and days feel both monotonous and full of activity. There is so much time to sit and take in every detail, and yet the details are limited-- a small room, nurses who change shifts every 8 hours, the occasional person walking by the room. The tile of the floor can start to feel as familiar as an often-driven commute route, where every detail is so memorized that we might arrive without remembering the trip. The world inside that room can feel small, and at the same time the enormity of having a sick child can feel like the biggest load one may ever carry.
It can also feel very hard to leave the room, especially when our children can’t. We don’t want to leave them alone and we worry what might happen while we’re away. Time seems to pass in 20 minute increments, and only after an increment has passed can we be sure it was an uneventful one.
It’s hard to play a long game when the world inside a PICU room feels so small, but that’s what parents and caregivers most need to do. In the hospital, we are the emotional support, the advocate, the ones watching over every move… and, yet, so much of the experience is out of our control. Once our child transitions home, much of the support that exists in the hospital will be gone and our caretaking role will only increase.
For this reason, it’s important to take care of ourselves during that time in the hospital. Fuel in our tanks is fuel in our children’s tanks. We cannot show up for them in the ways they need us when we are physically exhausted or emotionally depleted. Some level of this is unavoidable-- those caregiver beds in the PICU rooms are only so comfortable-- but, with conscious effort, we can create small moments throughout the day that provide us with live-giving energy.
One of my favorite ways of doing this is through what I think of as Lobby Love. Setting aside a short amount of time each day where a friend or family member can meet you in the lobby can literally change that whole day around. Sometimes, you may need that person to just listen as you tell them what’s happening upstairs in your room-home. Sometimes, you may want them to tell you something totally unrelated, and will be glad to listen to work dramas or soccer tournament excitement, as it will help you remember that there is *so much life* still happening outside the hospital.
Friends might show up with a pet or a coffee order. They might arrive with dinner or a bag of magazines. What we most care about is that they show up in a way that is open, that shows they are there for you, and that they understand hospital timing can’t always be controlled so they may need to wait or you may need to rush off.
If possible, take a ten or twenty minute walk outside with these visitors. Feel the heat of a humid summer or get up close to the changing fall leaves. Your brain and body will shift after even a short time outside.
Lobby Love works best if it can be set up by someone else, in a way you don’t need to manage. A simple spreadsheet listing the day, who is visiting, what time they’ll be coming, and what they plan to bring is perfect. You can be clear what hours work best for these visits and how long you feel comfortable being out of your child’s room.