While I know all of this might not sound so bad to you, to me it sounds like another hurdle for Lily to jump over in order to pursue her dreams of being a pararower.
It's been a long journey for Lily to get this point of embracing, accepting and celebrating the way cancer impaired her physical body. Since she was just a baby, the focus was always on overcoming endless physical challenges to do all the things most of us take for granted--walking, writing her name, dancing, swimming, riding a bike and doing her eyeliner. We've always told her she can do anything--and we believe that. But, we've also always acknowledged her challenges, accepted her differences and loved her just the way she is.
The work Lily puts into her continued physical rehabilitation, even 16 years after her diagnosis with a malignant brain tumor, is not about changing herself. It is about honoring her potential. And so much of that potential exists because of the extreme challenges she has faced.
Everything--the good and the bad-exists in some sort of balance. The juxtaposition of the hardship cancer placed in Lily's life with the hardwork required to compete and train at the highest performance levels is what has made her a rower.
It is what has made her a pararower.
To be a pararower is to move disability and impairment from the margins and instead place it where it belongs: in the boat, on the erg, in the regatta and on the team.
The designation is a big deal to Lily. It's a big deal to her mom (that's me!), too. For me, Lily's desire to compete as a pararower is a testament to the beauty of my daughter, the athlete and the survivor. It is a destination and the start of a journey in which my little girl--who is just 17 years old--is boldly accepting herself for who she is--impairment and all.
To Lily, the pararowing designation is important because it means she can compete as her truest, strongest self. It is not a way to lower the competition or make things easier on her--instead it is a way for her to train and compete at the highest levels because she is a dedicated, fierce athlete.
I know it is also important to her to be a role model for other young athletes with impairments. She has spent most of her journey without a role model exactly like her--but she's always looking out for the other girl she sees just trying to get a shot in the game or on the stage or on the water.
So now, she told me, the real work begins. Lily is determined to find her place in the pararowing community and determined to be seen, not sidelined. She's got an amazing high school coach and team in South Jersey Rowing. She's got a scrappy mother who writes endlessly. She's got a dad who will drive her everywhere. She's got a sister and a brother with hands on her back and cowbells in their hands.
And Lily's got her experience--rising up, falling, rising up again, falling again (twice in the river) and then never, ever giving up.