Hot Pink and Black. (Day 156, Year 3)

Lily is busy finishing up school work and packing. She's going to miss three days of school this week. She's already reached out to her teachers, explained the situation and made arrangements for the days she will be out. By situation, I mean she's told them she is rowing at U.S. Youth Nationals in Sarasota, Florida for her team, South Jersey Rowing Club. She is very quick to specify that she is not rowing for the town rowing club. Not because there is anything wrong with that club. However, it's very important to her that her affiliation is clear and there is no confusion that she will wearing hot pink and black and not the town red. 

It was a jump for her to leave our small town team. We love it here; but sometimes its smallness restricts movement.  That's what it did for Lily on that dock for one year. No oars in the water. No hope of racing. No chances to try. Just restrictions. 

Her time on the dock began two years ago today. Lily's shunt--the device on the top of her ventricles that works to move cerebral spinal fluid through her brain and spine--failed. It had failed 17 months earlier in a way that was catastrophic--an ambulance came. The police and paramedics who showed in our living room had showed up in my children's classrooms to tell them about K-9s and to talk about drugs. That night, they were in our living room trying to get permission to drive our 13 year old daughter, who was nearly unconscious, over the bridge to Pennsylvania to CHOP. 

They did. Lily's shunt was revised. She woke up happy and alive and talking. We thought we were in the clear. 

But, then her shunt failed again, two years ago today. Lily woke up from that surgery telling her medical team that she needed to be discharged in a few hours in order to make it to her end of year choir concert. They complied. Lily was out of the PICU in less than 24 hours. 

We thought she'd be back on the water a few months later--more than enough time for the 3 inch incision on the side of her head to heal. Instead, Lily was dockside. They simply wouldn't let her row. I could say I don't know why, but I do: they were scared. 

They were scared Lily would get hurt. They were scared she wouldn't be fast enough. They were scared to demand that their team fully stand behind her. They thought they were protecting Lily from injury and heartache, but really all they did was prevent Lily from trying,

I remember Mike telling the team, let her row. 

No, they said. 

Lily remained determined. She sat on that dock every single practice. She'd counsel teammates struggling with their own injuries. She'd make up her own land workouts. She'd load boats. She'd swallow down the rage at exclusion. She'd cry at home. She'd go to the guidance office when it was too much. One year on the dock, but then she made a plan: I am going to go to the Head of the Charles mom. 

The Head of the Charles is a regatta in Boston--a signature crew event on a legendary rowing river. 

Lily wasn't even allowed to row. How did she think this was going to happen? I have a plan, Mom. 

Her plan led her to South Jersey Rowing Club and that hot pink and black uni. Her plan hasn't quite taken her to the Charles; but instead it's somewhere better:

U.S, Youth Nationals. 

Lily will row on Thursday; then again in the Finals over the weekend. It's not just a race--it is THE race. It is the race were youth rowers from all over the country compete at the highest level. Coaches send their best athletes--the determined, the fierce, the graceful and the gracious. 

She still has a lot of packing to do; she has to be out of here in less than 24 hours. She'll go without me; a leap that makes my heart break a tiny bit; but she cannot stay with me always. Mike will be there. The rest of us will be watching from our living room, screaming for our girl in the hot pink and black.