Time Marches On
Ana’s last scan was in January – the month I was convinced she would be starting aggressive chemotherapy. But she stabilized on the Votrient, had radiation and now it’s spring and she is feeling well.
Her next scan is in two weeks and things may change (I am terrified, distracted, dreading the worst…) BUT FOR NOW (today, right this minute), we’re planning her first year in high school which we hope will be as (mostly) uneventful as her last year of middle school.
This is a stolen moment, a gift given. Because of brilliant doctors, and modern medicine, and a man who died but gave Ana the gift of a new liver, my child may start high school in September.
So, here we are. Jim and I met with her soon-to-be ninth grade guidance counselor on Tuesday to get a tour of the high school and talk about setting Ana up with a 504 plan. Just to recap – she’s going from a small, progressive private school with a graduating class of 19, to a large, public city school with about 2000 enrolled kids (I mean, it’s a small city, but it’s still a city school). Here’s a rough approximation of what the building looks like.
What is a 504 plan, you ask? I didn’t know either, but someone who reads this blog (a woman whose daughter had a liver transplant about six months before Ana and is a year older than her), sent me a message on Facebook advising me to look into it for Ana.
(Thank you, Kim!)
So, as I was saying. What is a 504 plan? “It’s legal document designed to plan a program of instructional services to assist students with special needs who are in a regular education setting.”
“Section 504 is a civil rights law. Section 504 protects individuals with disabilities from discrimination. Section 504 ensures that children with disabilities have equal access to an education. ”
The above sentences are in quotes because I lifted it from this site, which has a lot more info about what’s involved. It’s difficult for me to reconcile the fact that Ana has a disability – that cancer is a disability in the sense that it prevents her from having equal access to an education. But it does.
Cancer is an endless purgatory of treatment, remission, recurrence, sickness, scans, labs, more treatment, more waiting, more sickness…So we found ourselves sitting in front of her guidance counselor who goes by the title of “Coach” and is a big, cheerful, caring man with two sons in the school, trying to explain the struggle that’s happening in Ana’s body and in her life, and that even though she looks good NOW, even though she doesn’t want to be “that cancer kid,” even though she’s bright, and talented, and fiendishly sarcastic (in a good way), she will need to work twice as hard as most of the other kids.
On the surface, Ana is the picture of glowing youth – beautiful, healthy, strong. She is luminous.
But she is fragile. She will need to be strong when she’s in pain. She will constantly face the threat of disease progression, future surgery, chemotherapy and the shadow of a disease that wants to kill her while trying to navigate the endless hallways of this endless school.
So we needed him to know her. We need all of them – the principal, the office staff, the vice principal, the school psychologist, the teachers and assistants- to really know her. Is that possible? I don’t know. But the 504 plan is a place to start.
There is a big part of me that wishes money wasn’t an issue in our lives – that we could send Ana to a private high school which is just as progressive, thoughtful and personal as the school that has embraced our family, and nurtured our children these past eight years. But we have run out of resources. And, anyway, this is my dream – not Ana’s. She is scared, but excited. She wants to experience public school, fall in with the herd and try to make her way. This is an experience she needs – a rite of passage that we weren’t sure she’d reach, and of course there’s an entire summer to survive before she walks up the marble steps of her new school and begins the next chapter of her life.