Last night, Lily told me she had her first reading comprehension quiz in history. She teacher told them not to study; but instead to just read the chapter.
Lily studied. She studied after crew practice and horseback riding; then she studied again after her musical theater class. She woke up this morning and and reviewed the chapter again.
I know her teacher told her not to study; but life has taught Lily that you can never "just read the chapter," or "just check the box," anything worth doing requires work and fight, even if it is just a little quiz in history class.
Everything in her life has been hard fought. She fought to breathe as a preemie. She fought to live as a toddler with cancer. She fought to walk as a preschooler. She fought to write as an elementary schooler. She fought to make friends as the new kid in 5th grade. She fought to be seen as a capable student in 7th grade. She fought to be on the crew team as a Freshman.
She fights now to be seen as a good student--every day.
Her handwriting is still shaky--one teacher commented on it this year and as Lily told me about the interaction (which included Lily advocating for herself and explaining that she simply needs to type things); I could see her shoulders slump and the defeat in her eyes. And then she said, "Mom, it is just really stressful to explain these things, year after year."
I could really only say, "I know Lily, but what do we always say. . ."
To which she replied, "It is an opportunity to make them understand, Mom."
I've been fighting along side her since the beginning. When you have a difference--any difference--and when that difference is from a terrifying diagnosis like a brain tumor--people do not ever immediately think: "good student," "driven athlete," or "capable."
And I get it. The day Lily was diagnosed, after I asked if my baby would live, I asked what disabilities she would live with. Dr. Singh, who was the neurosurgery resident at the time said, "she'll be fine. the brain will work it out."
He was so sure of himself and I doubted him until the moment I saw Lily smile after her brain surgery, then I realized, yeah, she will be fine, she just smiled after brain surgery.
Fine has not come with the snap of her fingers. Fine has come with fight and hard work. I admire my daughter so much. She possesses a mental toughness that I've never encountered anywhere else--a drive to succeed and thrive. Lily will fall and has fallen one thousand times. But, she gets back up. She feels nervous and embarrassment and scared all the time--but she still puts one foot in front of the other.
It is not that Lily is an A+ student (although she has been) or that she is this crew superstar (she works hard) or that she is an incredible dancer (she's lovely); it is that she does not allow fear to hold her back. Lily does not let failure stall her. Lily fails all the time.
But, then she keeps trying. Good students, strong athletes, capable adults--they fail all time.
Lily lets fear exist and she accepts failure; and then like the good student she is, she studies harder, wakes up earlier, plans more, asks for help and humbly accepts that to succeed, you will fail.
Author's Note: I wanted to write this tonight after I wrote about Lily's IEP yesterday. Sometimes, when I talk about my kid with the IEP, I think people have this misconception that she is not a good student. That bothers me, a lot. The purpose of her IEP is to provide her with supports that are outside of the standard supports provided to the general population into to ensure that Lily has equitable access to an education. For our family, the IEP has always been a way to navigate the institutional aspects of school--the framework and protocols that exist to keep order for a larger population. Someday, when she is released from the institution (haha), I believe the accommodations in the IEP will be the tools Lily will use to navigate college and career on her own.
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