After 55 days, we brought Megan home from the hospital this week. One of my good friends told me that she prayed her stay at home would go well. Her choice of the phrase “her stay” struck me, as we don’t generally don’t say that about someone who’s at home. But while my friend is quite right in this case, her perspective–which she got from me–made me wonder if I’ve wrongfully colored everyone else’s view.
Our joy at our daughter coming home is muted, knowing that we’re not done with hospitals. She’s not sick enough to stay there, but she’s still very sick. We have a long discharge list of IV management and meds and lab work and danger signs to watch for and a weekly six hour round trip for chemo until January. Any flare up or infection will send her back to the hospital. And we learn this month if she requires a transplant, requiring another long hospital stay.
Still, we’re very grateful. Some patients with this monstrous disease spend many more months in the hospital before coming home. Some, tragically, don’t come home. This thing is deadly: it has a track record of cutting down healthy teenagers in just days. That our daughter has made it this far tells us that God is not done with her yet.
My struggle since I learned she’d be coming home has been striking the right balance between celebrating and managing expectations–hers as well as my own–that we will likely be going back. I’ve tried to be honest with her through this journey about what’s happening. She’s nearly an adult, and it’s happening to her; she deserves to know. And yet it’s hard. As parents, we always want to protect our kids. I’d love to let her have unbridled joy at being home, but it’s not fair to keep from her that we’re likely to go back.
But I also need to remember to enjoy this time and not be consumed by what may be coming next. We don’t just deserve this time, we need it. So we will eat dinner together as a family and spend time together and treasure each day together at home like the gift it is. And we will remind ourselves that home is wherever we are.
“Where thou art, that is home.” –Emily Dickinson