Ripples that started 8 years ago, still reaching changing the coastline.

It’s been awhile. Once upon a time I wanted my blog to be a share of my drive as a writer and a teacher.

Within a month of that decision, it became what we are doing as a family as one of us struggles with having survived a stroke.

What I found as time went on was that I needed more writing, more immediate feedback. So I turned more to Facebook and less to blogging. I could post a status and hemi-moms, and other friends would immediately comment and I would feel less alone.

Sometimes blogging is lonely. It’s like standing in front of an audience, an audience that doesn’t show its face and doesn’t give feedback other than staying in their seats. It’s a bit like Life. Day-to-day life is lonely sometimes, no one stays in their seats. I don’t have family nearby, I don’t have a support system that bops in regularly, and even if I did I probably would only be more self-conscious of my messy, frat-like house. :)

Once upon a time I wanted to be something different than what I have been morphing into, especially these past few years. I wanted to be a leader in learning. I worked so hard to get my degree in education, interrupted for awhile as my life took a different path; I became a young mother. But I doggedly continued my schooling and graduated before 30. Then after a divorce I thought I would step up my career again and focus on becoming a voice in teaching. But I fell in love, married again and became the mom to my two girls.

Daughters are different. Raising daughters after sons is different. One daughter having a disability changed everything. I still have a career but I no longer aspire to be an education guru.

Everything shifted. It had to. This past year made it even more obvious to me: Kath had some major injuries; I couldn’t always attend meetings and committees I had committed to; Kath’s learning issues will increase as she progresses through the school system; and Alex needs me to help her balance between being the sibling of child with a disability and being a kid.

I have to look at the world with different sets of eyes. I look as a woman, a woman in her 40s who has given life to 4 children. A women who has survived divorce. A woman who teaches young students and young writers of all abilities. A woman who has survived tweens at least twice. A mom who has survived tweens. A mom who has made many mistakes, but also done some pretty good things despite inexperience and lack of confidence for my sons. A mom who has continued to make mistakes but also done some pretty good things despite experience, fear and confidence. A wife who has struggled with relationships and knowing how to claim parts of herself in a life where all parts are already claimed.

I’m not often a good wife or friend. I’m not a good daughter, sister, niece. I’m not a good daughter-in-law, sister-in-law or cousin. I don’t have enough energy to do or be more than what I already struggle with.

I live in flight or flight and survival mode most of days. I live in fear. Fear of Katharina’s struggles; her balance issues which lead to falls which sometimes mean a hospital visit; her vision issues; her understanding issues; her friendship issues, her fitting in issues-her becoming a follower issues; her everything issues.

We were walking to the ballgame stadium on Saturday and I was holding her left hand, but I could feel her struggling, she had slowed down and was moving oddly. “What’s up, toots?” “Nothing, just trying to scratch my ear with my hand and it’s hard.” “Do you want to use this hand?” “Nope.” And so she worked at making her cerebral-palsy effected right hand (the one that doesn’t listen well to her brain) scratch an itch she had on her right ear. And it reminded me that…

I don’t only live in fear. I live in awe and amazement. I live feeling honored; Kath once told me that she chose me as her mom because I was the best-while I don’t believe that I am the best, I am honored. I live with someone who struggles to comb her hair, cut her food, dress herself, wipe herself, remember math facts and climb on playground equipment. I live with someone who can’t catch a ball to save her life, but she did learn to throw a frisbee and a ball, so we have hope that we can convince her eyes and coordination to get their act together for catching. I live with someone who can snowshoe, swim, and ride a scooter. I live with someone who knows that many things the rest of us take for granted, will be a challenge, that she will have to learn around her brain spots to be able to do it…differently…that she will have to work 10X harder…but she will do it to the best of her ability…eventually.

I live with someone who teaches me grace. I live with someone who teaches me patience. I live with someone who teaches me resiliency. I live with someone who teaches me strength. I live with someone who teaches me to laugh at myself. I live with someone who teaches me forgiveness. I live with someone who taught me things are different than my plan, but that’s okay. They are still beautiful, still tasty, still bright and shiny. I live with her sister who also teaches me these things every day.

I will never be a leader in education in the way that I envisioned for myself when I graduated from high school. There was a mourning for that version of me this year. I was angry, I felt it slipping through my fingers and I was mad because that version of me could not do what I needed it to do. And damn, did I try! I couldn’t be what I need to be for Kath and Alex and be that leader-woman. And Alex needs me just as much as Kath, just differently.

My career will be a classroom teacher who schleps her bags of papers back and forth, who reads and rereads 9th graders' writings, and tries to get my students to see their own value. I will not be a speaker at conferences. I will not be a presenter at workshops. I will not write that book about teaching.

I will be Chris, Nick, Alex and Kath’s mom. All I have is there. And it is more than enough. What a wonderful revelation. I am not 'giving up,' or 'settling.' I made a very thoughtful, very honest and genuine choice.

Over this past year I have had people grab my hand and say, “Hey, I’m worried about you, are you okay?” “You are tired, I know, but are you okay?” and even just those words make me feel less-alone and more-strong. This year was a struggle as I came to grips with myself and just what my plan, path and new goals will be.

I am not just invisible as the supporting actor in my children’s and husband’s lives (Or my students').

I am me, writing my awareness posts so maybe Kath’s life will be understood by those who fear ‘others’ who are ‘different.’ Maybe my status writing and blog will help people to remember that the siblings of a special needs kid are also people who despite how amazing they are, still need support.

I am still very determined to work on my novel stories. I still have my dreams of being the best teacher my students need and a published writer.

But this year I realized my path swerved again and it’s okay. This summer I am not teaching, or going to conferences or workshops or trainings. I am teaching my girls ‘summer home-school style’ and helping Kath see how to scaffold for herself. We are writing, going to museums, the lake, reading, adding, subtracting, dancing, acting, playing, coloring, visiting family, working on projects around the house, hoping to learn sewing/quilting. I am still writing. I am still listening to my husband as he shares his career dreams that once were mine too.

And I am finally (almost all the way) okay with my new shift.

When one of us had the stroke, we all felt the ripples and we have all dealt with the life shift and change it brought, reidentifing us in our own ways. We have all morphed from who we were before the stroke to who we are during our dealing with the ripples and waves after the stroke.

And here I am.

At least for Today. 

Dear Governor Cuomo

While this might be too long of a letter to actually send, not sure he reads what he receives anyway, I think it is something that needs to be said. Or at least I need to say it.

To Governor Cuomo,

What can I say that others more eloquent and knowledgeable haven't already said?

My story.

I am the mother of 4 children. Chris is 27. He graduated from NY public schools and attended Bennington College in Vermont. He now works in Washington DC at a job he loves. Nick is 25, almost 26. He graduated from NY public schools. He attended the University of Rochester. Alexandra is 10 years-old, she is in 5th grade and she has gone to Miller Hill Elementary School her entire education career except that year in our local pre-school. Katharina is 8 and she has spent more time in educational programs than any of my other children had at this point in their lives. Her path has been different.

My first 3 children have always been full of curiosity, they loved to learn and had wonderful educators who helped bring them along to their next level of education. Many times that level was ahead of their peers and ahead of grade level, but these teachers were not concerned with keeping students "on the same page" or on "test prep," nor were they concerned with a formal formula curriculum, so these educators helped to feed my children's curiosity and allowed them to keep growing at their own paces, which further encouraged them to have curiosity and love of learning. It's a great natural cycle.

And these educators did it for all of their students. They met the students where they were and brought them as far they could. Not everyone reached the same end points...but they learned as much as they each were capable of. They had individualized instruction because everyone knows that everyone learns differently.

My last daughter, Katharina is a stroke survivor and she has had to be more involved with learning how to learn and formal education for some of the years my other children had free-play time. She has mild cerebral palsy, vision issues, cognitive delays and speech delays. But before you discount her as someone not worthy of a 'normal' education, let me tell you about her.

Katharina fought like hell to survive and be here. She survived a stroke before she was born. She has been blessed to have wonderful doctors at Albany Medical Center and now specialists throughout the Capital District. She had wonderful therapists and programs through the Rensselear County Early Intervention program and has amazing public school teachers in our home district of Averill Park.

My Kath has a burning curiosity and desire to learn. Just like her siblings. She has more empathy than many adults. She has the resiliency and the persistence that would outshine Olympic athletes. Her laugh is contagious, her hugs are healing and her eye contact is steady. She dances in ballet, tap and jazz with accommodating teachers who see potential and not disability. She rides a horse at hippotherapy. She loves museums and books and dolls. When she grows up she wants to work with Winter, the dolphin that the movie "Dolphin Tales" is based on.

Kath knows she had a stroke. She's beginning to understand that's the reason she can't always keep up with friends on the playground and in the classroom.

Kath is beginning to understand that for her, her life will always mean that she will need to work harder and smarter. She knows that learning her math facts means spending 5 times (or more) longer than the other kids. She knows she might not get through all of the stations in physical education class or have the time to complete an art project or finish reading the library book in the given week of borrow time. She knows she wants to play an instrument when she gets to 5th grade, besides the piano she already takes weekly lessons on with another wonderfully patient teacher. She knows when we sit to do homework each night it will probably take her two hours to do the work she missed during her different therapies as well as the 'normal' homework.

My community--Averill Park, Miller Hill Elementary School, Albany Medical Center, Rensselear County, Isabelle School of Dance, EBC Horse Therapy, Ms Mary, my friends and her siblings-- have surrounded Kath with so much love and support that Kath has succeeded in ways none of us imagined when she was first diagnosed as a massive stroke survivor.

However, what I fear now for my amazing daughter, as well as for my other daughter, my students and my husband's inner city students is a one-size-fits-all education model which does not work for the various abilities and strengths our real life children (the children behind the data) have.

We, as communities, have an obligation to raise our villages up. To lift one another to our highest branches. Our children each bloom at different times: some need more sun, some need more rain, some need more time, some need it all, but they bloom and they grow...given the respect for who they are and what they can do. And given the time they need.

The idea behind making sure that each student has an equal opportunity at a solid education is a noble one. The idea of testing and forcing each student to gallop through the curriculum regardless of how they learn is devastating to our children. Tying students' scores to the effectiveness of a teacher is insane. Teachers are not quality control agents inspecting each product and passing them along or rejecting them.

My beautiful, courageous, strong, smart, caring daughter struggles to take tests, especially timed tests. She shuts down and cries when we try to practice at home. Her confidence-level is fragile and this education reform of standardized one-size-fits-all education is chipping away at her and other students who teeter in your data margins.

The idea that next year she will be asked to have hours of test prep instead of furthering her love of learning, her curiosity, her math facts, her reading, her love of cultures is frightening. The fact that with her disability she will be permitted extra time for this insanity...time which will be taken from learning...means that my daughter will not have a chance to 'catch up'...she will not be able to ever ever catch up.

This education reform that you are pushing through, Governor Cuomo, goes against everything we have found to be research-based. This education reform will mean that only certain students will be able to get a decent education, the rest will be forced into more 'academic intervention services' (missing more classroom/learning time) for prepping for tests that are developmentally unsound and unjust.

I never want my daughter, or other children who struggle to learn the 'normal' way and speed, to believe that they are 'not-good-enough' or that there isn't enough room at the school tables for them.

I beg you to reconsider your position and your push for Common Core, standardized testing and draconian teacher evaluations. Our children need us to be the village that can help them through their school years with support and research based methods for teaching and education.

Thank you for taking your time to read this,

Veronica Gaboury
Mom of 4
Public High School English Teacher