Even though we had let the world know about our situation, I still hadn’t let the world back into my reality. By the time we were finally discharged, I had become so institutionalized that I was afraid to leave. As I carried N through the doors to the ward, his first time leaving since we’d arrived eleven and a half weeks prior, I kept looking for hospital ninjas to leap out and keep us from going home. When we got to the apartment, I couldn’t believe no one had chased us down and taken him back. I was almost too afraid to visit the ward a couple weeks later for fear that he’d have to stay again. To this day, when we visit, I’m paranoid that they’ll stop us from leaving. I couldn’t wrap my head around the fact that we were ALLOWED to go home with him.
If you find yourself in this mindset, know that you are not alone. Although this may sound counterintuitive, I’ve found that going back and visiting more often has helped me alleviate these fears. Every time we walk through those doors to visit and then walk back out again, unhindered, it gets easier and easier. So every time we go back for a clinic appointment and we have time to stop over at the hospital, we do. It helps me realize that we can be just visitors and not have to worry about being patients anymore. Besides, it’s incredibly fun and rewarding to show the nurses and doctors how much he’s grown and developed since we last saw them. Being surrounded by their smiling faces helps dissolve the memories of when they were rushing about, fighting for his life.
The month we spent at the apartment prior to going home for good was a highly transitional period for me. I got to practice being a mom again, and being a transplant mom at that. I had to relearn how to change diapers; there were no nurses to help me with midnight feedings; and there were no monitors to tell me he was still breathing and his heart was still beating. That was perhaps the most difficult part of leaving. I had become so accustomed to seeing his screens full of numbers assuring me that everything was working the way it was supposed to. I had to learn how to be okay without these numbers. For the first few weeks, I would get up in the night and just stare at him, watching his chest rise and fall, obsessing over listening to his heart through our stethoscope.
One of my contributors, Amanda, felt the same way:
We are still adjusting to our new normal. When we were discharged, we lived in an apartment in Birmingham for about a month. That really helped us transition to what our new reality would be like. It was nice to be close to the hospital just in case anything came up. We were used to Davis being hooked up to a monitor. We depended on those numbers to tell us if he was okay. Once we were allowed to go home to Auburn, we had to transition again. It was like bringing a new baby home all over again.
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant
I have found that there are two general ways of actively dealing with things (versus denial or avoidance): gradually, or all at once. You can ease your way into the ice bath, or you can take the plunge. Either way, it’ll take your breath away and likely induce numbness. It’s up to you how quickly you want that to happen. For better or worse, I’m a gradual, dip-your-toes-in-first kind of girl. That’s how I treated our transition in the apartment: lots of baby steps. At first, I counted his breathing rate all day long. I watched for any signal of even slight distress. I wouldn’t even let him nap in another room; he was with me at all times. Gradually, as we got more and more confident and comfortable, we relaxed into a routine. We became a little less obsessive. That worked for us. If you’re a dive in, take-the-plunge kind of person, and your team will let you go home, then that may be what works for you. Being in a familiar environment may take some of the hospital stressors away and help you find your new normal. Identify what kind of person you are, what you need, and then do what you can to make that happen.