My son told me tonight as we were snuggling in his hospital bed reading an endless line of books, “I like home time at the hospital.” As heartbreaking as such a statement might seem, it was, in fact, a bit of a victory.
Already, this has been a very long stay at the hospital. We have been here for two weeks now, which is longer than we were home after our first stay, but during our first stay, there was this assurance that we were here for a finite amount of time, that we would be going home to continue his treatments there, and for the most part, his course of treatment would be on an outpatient basis until we came back for his transplant. This time, while I wasn’t initially prepared to be back in, we were given a minimum of three weeks to be in the hospital. Last week, we were told it would be at least another three weeks. In other words, it’s going to be awhile.
Unfortunately, BG has also been on what is called “droplets precautions,” meaning that he is essentially quarantined to his room, and any hospital employee who enters his room must wear a mask because he has rhinovirus–a.k.a. the common cold. Only, he doesn’t really have it anymore. The hospital policy is such that he is on these precautions until his discharge. We could be discharged one day and readmitted the next, and those precautions would be gone. It’s an important policy on this floor because most of the kids here are seriously immunocompromised, but it means no visiting the playroom or seeing anything outside of this small room for who knows when.
When we realized our stay was extending and might continue to extend–and that we were going to be staying in the confines of this little room–we started bringing more and more of BG’s toys and books to help him feel at home. I managed to score a couple of boxes with which to make a little kitchen for him, and my wife brought some of his kitchen supplies from home. Since he’s not attached to an IV anymore, and we want to encourage him to be up and around, we thought he would love this. Instead, his reaction upon seeing his things was to throw them all across the room and shout, “I don’t want any of my things! I don’t want my kitchen! I don’t want my books! I don’t want the fellas! (his stuffed animals)” We were pretty shocked and saddened, not understanding what was going on. Was he not liking the reminder of easier times? Did he not want to think of home? Was he actually just bored with his things? We knew quite well that he wasn’t letting us read his favorite stories, that he wasn’t interested in seeing his bears, but what was this? The kitchen tools, his play food and utensils, his play coffee maker, these are some of this very favorite things. How could he not want these?
A few minutes into this, our son opened up to us and said, “I don’t want Mommy and Mama to leave me with the nurses. I don’t want you to go home.”
You see, he thought we were bringing his toys and his clothes because we were moving him in here. We haven’t been bringing all of our things, so he put the pieces together, looking also at the fact that these nurses have been taking care of him and taking over some of our mom jobs (bringing food, giving medicine, changing bedding and sometimes diapers), and he had determined that we were going to abandon him here. And holy shit did that suck to feel that even for a moment.
We wrapped him up in our arms and told him we were not going to leave him here, that when we go home, we will all go home together, that we are only here until he feels better. We explained that we were bringing his toys so that he could feel happier and feel a little more like home, but that home is still there, and we’ll all go back to it soon. His little mouth quivered as he reassured himself, “Mommy and Mama are not going to leave me with the nurses! No!” My heart was splintered into tiny pieces.
Our boy has such a minimal understanding of what is going on. He knows he is sick, but on days like we have had this week, he doesn’t feel terrible, so he’s far more aware of his surroundings. He gets bored more easily, pushes boundaries a little more, lashes out a bit more too–and he is very aware that he is in the hospital and can’t leave, even though Mommy and Mama sometimes do. This makes it harder for him to be here. We’re trying to create a little more predictability in his days. We have created a weekly calendar so that he knows when J has to go teach and when she’ll be back, so that he knows the day I will likely take some time off and come back, so that he knows when all of us are here together because he needs to know that we are here together.
After we reassured him that day that we weren’t going anywhere, we watched our boy play in his kitchen. He cut up his wooden cutting food, made us some tomato sandwiches and added pinches of salt with his usual flair. And then he asked us to bring more. He has been letting us read his favorite stories again, letting us give him food he normally eats at home, letting us bring a little bit of home back to him.
So tonight, his love of home time, well that just melted me, stitched my broken heart back together, and left me feeling like he trusts us again because our boy knows that we will go home together. It might take awhile, but the Reproducing Genius family is not going to be leaving anyone behind. Tonight BG told me that his favorite part about staying at the hospital will be when we walk down the hall and get into the elevator to go to our car. “Then we will go home.”
Oh how I wish I could just wrap him up in a blanket and escape to our house right now, to put him in the middle of our bed with my wife and our cats and just sleep–our little family all together, safe and sound and snug in our home.