When we first arrived at Georgetown for Luca's transplant, I was nervous about the team. Not because they aren't competent. They are. Not because they aren't brilliant at what they do. They are. But because we had gotten so accustomed to Luca's team of doctors and nurses at Children's. We had developed great relationships and trust with Children's. We knew how things worked at Children's.
I was nervous for the newness of it all. Of getting used to a new system. New doctors. New residents, interns, nurses, staff. New facilities. Building new relationships. Building new networks. Learning to let our guards down and trust these new people, who we barely knew, to make life and death decisions and recommendations for our daughter.
Trust is not something I take lightly. I am an outspoken person in general. But even more so (if that's even possible) for Luca. I will advocate for her until I am blue in the face and out of breath. I will fight and finagle my way through the system to get what is best for her. I will suck up to the right people. I will do whatever it takes.
You learn very quickly that being nice goes a long way. Especially with the nurses. You learn that staying on top of her numbers and care, being present everday, puts a bit of pressure on everyone to pay attention. You learn that sometimes you have to be sugary nice to get things done. You learn that being understanding, or even when you are not feeling very understanding, that pretending that you are can do wonders. You learn that sometimes, it is okay to stand your ground and push, or even be a little (or a lot) stern. You become the world's biggest bitch in a matter of seconds if needed.
It sounds manipulative. And maybe in some ways it is. You do not mean to be mean. But when a little girl, your little girl is staring back at you and you have every reason in your gut to know something she is telling you, you act on it. You move your feet quickly to get things done. You move with purpose and your head becomes clear. Dignity goes out the window. You let words out of your mouth that have such meaning. You are short, concise, strong.
Having a child with medical challenges forces you to become a strong mama bear. Cuddly and nice, but with very sharp claws. Sure, all mamas have those claws, but they likely won't be used so soon unless you have a reason to. By now, my claws are sharp. I've learned how to use them. When to use them. Why to use them. You only develop these skills from one thing: practice. And I certainly have had practice. Too much practice.
That does not mean you like using those claws. It is not fun always needing to watch and advocate. It is exhausting working the system, while still trying to maintain part of yourself and being kind. It is a delicate balance that I am working on maintaining. But I will do it. I will do just about anything for this precious, beautiful baby of mine.