These days, I am so cautious about what I tell people. The hardest question I get asked on an almost daily basis is "how is Luca?" Seems simple enough, right? But unless someone has kept up to date on the caringbridge site, how do I condense what has happened over the last 5 months (Saturday was 5 months since her transplant) into a simple answer?
Do I just answer as to how she is doing in that instant? Do I answer honestly, and say she is just "ok"? Inevitably, if I answer with just ok, it is followed by tons of questions about why and then I feel like I should have just gone into detail from the beginning.
Now, I am typically saying "she is feeling ok but is having complications that keep us in the hospital a lot." But this answer, too, leads to questions.
The most common follow-up question that is hard for me to answer is "is she going to be okay?"
How do I answer that? Not only is that a difficult question to answer, but it also brings forth all of my fears about this entire situation because honestly, I do not know. Yes she is okay today - as in, she is here with me, snuggling, smiling, even if we are in the hospital. So for that, I am incredibly grateful. I know too many moms who cannot say that their baby is here with them, and there is not a day that goes by that I take that for granted.
But I do not know if she will be okay. Do we really know if any of us are going to be okay?
And then, if I say she is having a great day, people are then completely confused as to why she ends up in the hospital the next day, and say "well, I thought you said she was doing great?"
I do not know what the future holds. I pray everyday and thank God that we have today. I try desperately to stay in the moment. But how do I do that when people constantly ask questions about our future, about Luca's future?
And then, people get confused when I say she is in the hospital. I get questions like "but I thought she had the transplant awhile ago?" People do not seem to realize that transplants are incredibly complicated procedures. There are complications with any transplant - but the younger the patient, the higher the risk for complications. If we could have waited until she was even a year old to transplant, we would have. But Luca could not wait - it was critical that she be transplanted exactly when she was.
I so wish I could just say "Luca is doing great!" and that I did not have any complicated answers. But that is not reality. The reality is that things are complicated. Things change from day to day, sometimes even from hour to hour. She is stable. She is mostly happy. We spend a ton of time in the hospital. We snuggle her no matter where we are with her. She feels love from everyone around her, including the people who care for her. We do not know what will happen tomorrow, next week, or a year from now. But we know we have today, and we will never ever take that for granted.
How do you answer complicated questions?