I am a planner. I have my whole life planned. And honestly, it’s gone pretty dang close to plan. I graduated from college in four years, got the job, got married, had stair step kids, and got the graduate degree. Everything in life has gone according to plan. 

Until Lily.

Don’t get me wrong. She was planned. She was wanted. But from the moment I was pregnant with her, things seemed to go awry. 

I had early bleeding that was very scary. I thought I might lose her at five weeks along. Ultrasounds found a subcutaneous hematoma at eight weeks pregnant. I had an ovarian cyst and uterine fibroids. Then, of course, there was the big moment when it was confirmed to me that my life was changing forever and, no matter what happened, the best case scenario would be that I would have a severely disabled child with organ failure.

Lily and I defied the odds and I kept her in my belly to term but even then, she changed the plan and I had to have an emergency c-section four hours away from where I was supposed to give birth because she was a footling breech and I had no idea I was even in labor. 

Cut to the ICN. We were just about out and doctors reminded us over and over that we would be back. Kidney babies always came back to be admitted for the smallest thing. I told myself that we would be different. We would be the ones who didn’t have to come back. But here I am, writing this from a small room at Family House in San Francisco because we came back. 

The doctors try to be nice when they remind you that they did tell us that we would be back. They say the most heinous thing without blinking an eye. “Your daughter’s kidneys are dying and this is their last cry for help.” And as a mom, you sit there. You listen. You smile. You hold your baby close, grateful that there are medical advancements that make her life possible.

But on the inside, you scream that this wasn’t the plan. This wasn’t supposed to happen. I was supposed to be home with my three healthy children. I was supposed to get a normal life. My baby was supposed to get a normal life. 

But that isn’t what happened. The plan failed. 

Being a parent is giving up control. You create another person who makes decisions despite what you might want. But being a medical parent is the ultimate loss of control.

As a mom with a medically fragile baby, I have realized that I want to advocate for the other parents who had big plans for their children. The parents who don’t know if their babies will survive. The parents who don’t know if tonight will be the night that they have to go back to the hospital. 

I want to give those parents hope that they are not alone. We are here. We are warriors. Even when we are terrified of what will happen tomorrow, we still get up. 

I’m not sure yet how I will be that person for other out-of control, control freak parents but I do know that that is my calling and as I cope with my complete loss of control, I hope that I can help another parent feel a little more in control of their own stories.