"As if."
"How do you know, unless YOU are on 'all the time'?" Unless you are stalking me?
I don't reply with any of those snarky responses, though, I often wonder if I should just shut down my page and leave people be. Then I get even more people telling me how much they love to read my posts. So, people, you are stuck with me. Because I get more out of this venture than you know. But let me try to explain.
Sometimes it would be great if I was on FB as much as people think I am, that would mean that I was doing a pretty good job avoiding my real life, the life not on FB. But I'm not. I'm really into my life, everyday. I don't post exercise updates (I barely exercise, not proud of that, just truth, though I am getting better); I don't post food updates (my meals might taste good, but it doesn't look that good, plus by the end of the school year, I am hanging by a thread with feeding my family according to the food groups and meal planning, I don't want pictorial evidence!). I do post my thoughts about teaching and I also post about my girls, my boys and my love of teaching everyone else's girls and boys.
I am on facebook because my biggest support group is a click away. My hemi-moms and dads. When Kath was diagnosed with her stroke I was reeling with so much fear, doubt and pain that I wobbled right off my orbit. Luckily, I found other moms, and a few dads, who shared their lives and understood the highs and lows. Highs like, "Kath learned how to push her hair behind both of her ears!" And lows like, "Kath fell because she has vision problems and one of her teeth turned grey."
My hemi-moms show me what the big stuff is and what not to sweat because when you live in my world, especially in the beginning of a diagnosis, it is easy to just be swirled around and not know what is Big and what is Little 'Stuff.' And that is very daunting.
My hemi-moms show me what books, articles and social media to read to guide my ever-loving research to find paths for Kath in a world that doesn't and won't slow down for her. My support group shows me what their kids can do and how maybe Kath will be able to reach for those same heights.
In my real world I have people who don't 'get it.' And while I certainly understand, I never 'got it' before I had Kath either, I have had more than one person say dismissively, "She looks normal. She's doing great. I wouldn't worry about it, she'll be fine. You worry too much."
And while they may not mean to be dismissive, their words suggest a disbelief of Kath's depth of brain injuries, or a belief that her brain insult is being exaggerated.
As if you can see a brain injury without an MRI.
So I search out my hemi-moms on facebook after I pick the girls up from school and Kath has had yet another pee-accident. I search out my support group when I get to the girls' school early and see Kath on the playground running like the wind, laughing aloud and having fun only to get tackled by the boy she didn't see (peripheral vision damage) and eat the grass. I search out my support people when I look at Kath's amazing progress but see what NYS is expecting her and her peers to be able to do each year, and I know she won't get there and she will start to feel that 'other/outsider/not good enough' category sooner rather than later. I search out my group of parents when I realize I am so focused on Kath that I forgot about Alex and whatever she is working on (so I throw myself into volunteering for her to make up for the fact that I don't even know what she is studying most days). Or what the boys are up to...or how my husband is.
I'm on facebook so much because I have odd moments of down-time...waiting for dance class to end, waiting for piano lessons, waiting for the water to boil, waiting for my brain to resettle and follow with what I need to be doing.
I am on facebook to laugh. I am on facebook to catch up with old friends and old students. I am on facebook to see what my writer friends are doing.
I enjoy learning about the politics of my friends, but not the harsh negative personal slander of politicians on either side, but rather the intelligent discourse of varied thoughts and beliefs.
I am on facebook for ideas, craft and food. I am on facebook for book and story ideas.
I am on facebook because I don't have time to socialize in real life and I need to feel connected to other people.
But mostly you see me on facebook because some days my life is crazy, my thoughts are frightened and scattered and I am looking to connect with other parents who have children who had a stroke too so I can remember that my wobbly feeling does not have to isolate me anymore. It doesn't have to make me so scared. My social media time reminds me that other parents are with me on this journey and they will be there for Big Stuff and the Little Stuff and all the in between moments when I don't know which end is up right and which end is in not.
As if it is ever really clear.
But at least facebook lets me feel as if I am connected with other families, all the time, even if I am not really online all the time.
So, now you know.
As if it should really matter. :)
My attempts at making sense of my world as a mom, a wife, a teacher, a reader and a writer. My attempts at understanding strokes, cerebral palsy, head trauma and what they mean to the learning process.
Tuesday, May 28, 2013
Saturday, May 18, 2013
Once Upon a Time--A Fable (I have hope that a 'magical day indeed' will occur.)
Once upon a time there was a huge ship-sized
vessel where the education of this mythological town occurred. The townspeople
came to the dock with their children and entrusted the teachers, the
therapists, the nurses, the aides, the principals, the custodians, and the
lunch ladies to care and further educate their young, while they, the
townspeople, went back to the land and did their responsibilities for the town
like taking care of the land, crops, animals and making the clothing. The land
lubbers also created and maintained the vehicles and cared for the town’s
elderly. Everyone was happy with their self-chosen positions and places, and
felt it was an even exchange. The land lubbers said, “We could never do your job,
teachers! Out at sea with the young minds living amongst the sights, sounds and
smells of creative exploration of learning with zest, grit, curiosity, teaching
social interactions, further curiosity and compassion. Thank you for taking our
children and helping them to find their path so we have a next generation of
people to care for our place, our town, our community.”
The teachers said, “You’re welcome. We love what we do. We
work so hard in the blazing glare of the sun and through the dark storms of
unrest because we know every child needs time to think and learn at their own
pace and this ship allows us to focus on them, one and all, at the rate of each
one’s learning. Thank you also for doing what you land lubbers do, so we can
concentrate on the children. It’s an all-win situation for the entire community.”
For many years this format was unchanged. The educators took
the children out to sea and taught them, as only those who understand brain
research and development can do effectively. The educators worked through a
variety of Nor’easters and hurricane storms along with various trials and
tribulation, but always kept the children safe and thinking.
Until one day, when a few evil jealous business land lubbers
grew powerful and while watching the teachers from shore (with binoculars) thought
that what the teachers did wasn’t so hard. “Look at the smiles, the joy, the
laughter on the people who were aboard the education ship! How hard could that ‘work’
be??” they exclaimed until people listened. And so, the land lubbers decided
that what THEY did was so very difficult and trying, after all they didn’t seem
to have ‘fun’ in their jobs. “Why should
teachers who get to put sunblock on and play in the sun need rest? Need even
time to eat? They should be happy to just BE on the boat…why should teachers even
get paid when it was the land lubbers, so obviously, who really did the real
work of the town!” The educators did not know of the unrest at first. They were
not privy to these conversations because the teachers were so busy on the ship
attending to their children and doing their calling, attending to their parts
of the time honored contract.
However, as money became tighter on land, less and less was
contributed to the ship of children. More money was needed for war and silly businesses.
Money, which was meant for the children, didn’t even actually make it to the
education ship’s budget account. Teachers were even blamed for costing too
much, when in reality less and less money was put into the ship’s coffers. Over
time the sails began to rip, causing major issues while at sea. Teachers and
supports were taken off the ship, they were told they were not needed. Some teachers
refused to leave the children who needed them, but were tossed over the side,
as if they didn’t even matter. Less
adults meant more kids for each adult still on the ship to keep watch over , so
students began to fall overboard because there were less teachers to catch them
before they slipped. Teachers were blamed again for incompetence. More issues
between the equipment began to drain resources, like the engine break downs and
faulty equipment as the ‘lowest bidder’ contracts fell apart as quickly as
their promises and their work. All of this made an environment where the
educators not only had to teach all subjects, as the teachers of the arts were also
thrown overboard, but teachers also had to: heat and cool as well as clean
their own rooms; fix their own sails; and buy food and supplies for the
students themselves. Many of these things they did because teachers didn’t want
the children to know what was going and be pained by what the adults were doing
to the ship and its people. They still did not understand the extent of the
anti-education revolt.
The land lubbers declared no additional money would be sent to
the ship until teachers could show and promise that children would indeed be
able to take care of the old people, the crops, and the land. Tests were rolled
out. If the students did well on these tests, that would show the teachers were
worthy. But what the evil jealous land lubbers did was make sure there was no
way the children could score well on the exams. The tests were on subjects that
were years above each child, then the teachers looked faulty. Again. The
horrible teachers. Teachers said they were doing their best but that the
parents too must help by making sure that parents and community were respectful
and honorable in their actions and their teachings, as well. Rocks were flung
at the teachers as they went home each night. The teachers now knew the extent
of the chaos.
“That is not OUR job, that’s YOURS! What do we pay you for?”
the land lubbers yelled as each stone was thrown.
Teachers tried to explain…"You made choices, land lubbers.
You gave less to the education ship. The sails need care and replacement and
caretakers. We are taking on water, we are going to sink! We must always be
prepared for storms yet you saw a sunny week-long forecast and spent the money
meant for the raingear on wars and silly business issues, assuming you’d replace
the money before it rained. Then you blamed us for the rain.
You took teachers off the ship. You took aides, nurses,
therapists, principals and custodians.
You continued to bring your children but before you dropped them off you
told them how foolish and selfish educators and education was; your kids didn’t
respect us any more than they respected you at this point. Then you expected
them to want to take care of one another…when you so carefully showed them how
to disregard others."
The people scoffed and said, “We could do your job.” They
seemed to completely forget that when school vacations came, many land lubbers
were finding ‘enrichment’ programs and anxiously counting down days to
bringing the kids to the docks.
But then when all seemed almost completely lost, a day of
magic came and the land lubbers realized that teachers were doing what was best...
before they messed it up. Teachers knew the kids. Teachers knew their kids as well as research
and they knew how to reach each child. The community began to break out of the
spell they had fallen under and they realized that the educators really did
know what they were doing. Teachers really did know how to teach and make a
better world, especially when given the respect and honor due them.
The day of magic came when the community came to the worn down,
rock-pocked ship. They really saw, now that the spell was indeed broken, how
tired and worn the vessel and the educators were and they were ashamed. The
community couldn’t thank the educators enough for staying and fighting for
their children, for standing up and doing what was right despite their anger,
their ridicule, their thrown stones. They even rehired the teachers they had thrown
overboard and fired, and they helped the teachers, the therapists, the nurses,
the aides, the principals, the custodians, and the lunch ladies rebuild the
community so that each individual person remained a human respected and honored
for ever after.
It was a very magical day indeed.
Sunday, May 12, 2013
Mother's Day is not the same.
All week I kept forgetting it was Mother's Day, so when people asked me what I was doing for it I was startled. Mother's Day? Wow. Nope. No plans. Didn't even really think about it. No plans. We never really 'plan' Mother's Day anyway. But I don't tell them that is mainly because I am not in charge of planning for Mother's Day. My husband is supposed to be.
However, now that Alex is getting older, she is the real task master and tries to keep her father on his toes and focused. Food for breakfast-in-bed (after I bought it and she asked me what I wanted). Check. Gifts ("Mom said she wanted that book Lean In.") Check. And the wonderful beautiful assortments of hands in the shapes of flowers and poems about how fast time goes (that make me cry), a collection of special pens, hand made cards and even an Animoto! Then there's also that wonderful bottle of Merlot from the boys, with an added beautiful message from my oldest. A text from family members and an old student and a status on facebook attaching my name as one of my old student's moms. Beautiful and soul-filling parts to the day.
Every year I want to go to the Tulip Festival in Albany. Every year I request a lilac bush. And although we never make it into Albany and I never get my bush I am ever so grateful for the love that surrounds me in the variety of ways that it does. I am so damned lucky. I know.
But every year I make that call and send that flower basket gift to my mom. Except this year I didn't. And after I had my beyond-filling breakfast in bed, I curled up and felt wounded and weak. I didn't have a mother to call or send flowers to. And the wave of mourning washed over me again as if it was yesterday, and not 11 months ago. I napped....
I woke up to crazy hair and the amazing blessing that it was my second oldest's 24th birthday, so I was able to tuck that pain in my pocket and move on, distracting myself. As mothers do. We moved onto Cracker Barrel...and he and I had a deeply philosophical conversation about the difference between 24 and 45 and how the things that rattle your bones at 24 don't get you so worked up at 45, if you're lucky. Or at least you have figured out what issue(s) rattle you the most and you tackle those instead of e.v.e.r.y.t.h.i.n.g being so overwhelming, unfair and unjust.We moved onto some shoe and clothing buying gifts at Target and then 16 Handles, frozen yogurt, for the girls and Roger and Starbucks coffee for Nick and me. Then home for singing over lemon bars and bringing Nick back to his place. Beautiful and soul-filling parts to the day.
And now I should be grading papers and readying myself for my final push of paperwork for the teacher evaluation stuff that is due Wednesday. But this must have out.
Not having your mom on Mother's Day... no matter how close you weren't...makes it all shift. It can't be the same. It shouldn't be the same. It isn't the same. There is a hole, regardless of whether I believe in heaven or not, and I do. It's different not having her here for me to call, to text, to visit, to see, to hug. And since we are coming up, in the next few weeks, on the 'year-ago' downward spiral of memories of her fight with lung cancer, I feel like it is all raw again.
And I wasn't expecting that. I thought I had gotten past all this. But here it is. And it must have out.
And although I embrace the cards, the gifts, the letters, ...the wine!...from my own kids, I have now moved into a painful portion of my life where Mother's Day will forever be different. And it doesn't matter that I'm 45 and I don't get so worked up about how 'messed up the world is' like I did when I was 24, I do still get worked up that my mother isn't here anymore.
And I guess that is a good thing to get worked up about.
But I AM a fortunate momma who has a balance of Wonderful in her life. I have 4 amazing kids who loved spoiling me today in the forms of loud shrill "HAPPY MOTHER'S DAY!" every few minutes (Kath); making the brunch (husband and Alex); spent the day with me as his birthday too and brought the shared gift of Merlot (Nick); went in on the wine, wrote a beautiful message and texted all day just to 'check in' (Chris). The answers to the girls questionnaires about me made me giggle from "How old is mom?" "25." Thanks Kath. To "what is mom's favorite outfit?" "Her Fahrenheit 451 t-shirt and jeans." (I should post the questions and answers in another post. They will make you giggle too.)
I am fortunate. But Mother's Day, as I realized today, will never be the same, and I will just need to move on, embracing the good, just like life.every.single.day, and moving on to work on what I can work on and perhaps fix, just as mothers do. Just as mothers do.
However, now that Alex is getting older, she is the real task master and tries to keep her father on his toes and focused. Food for breakfast-in-bed (after I bought it and she asked me what I wanted). Check. Gifts ("Mom said she wanted that book Lean In.") Check. And the wonderful beautiful assortments of hands in the shapes of flowers and poems about how fast time goes (that make me cry), a collection of special pens, hand made cards and even an Animoto! Then there's also that wonderful bottle of Merlot from the boys, with an added beautiful message from my oldest. A text from family members and an old student and a status on facebook attaching my name as one of my old student's moms. Beautiful and soul-filling parts to the day.
Every year I want to go to the Tulip Festival in Albany. Every year I request a lilac bush. And although we never make it into Albany and I never get my bush I am ever so grateful for the love that surrounds me in the variety of ways that it does. I am so damned lucky. I know.
But every year I make that call and send that flower basket gift to my mom. Except this year I didn't. And after I had my beyond-filling breakfast in bed, I curled up and felt wounded and weak. I didn't have a mother to call or send flowers to. And the wave of mourning washed over me again as if it was yesterday, and not 11 months ago. I napped....
I woke up to crazy hair and the amazing blessing that it was my second oldest's 24th birthday, so I was able to tuck that pain in my pocket and move on, distracting myself. As mothers do. We moved onto Cracker Barrel...and he and I had a deeply philosophical conversation about the difference between 24 and 45 and how the things that rattle your bones at 24 don't get you so worked up at 45, if you're lucky. Or at least you have figured out what issue(s) rattle you the most and you tackle those instead of e.v.e.r.y.t.h.i.n.g being so overwhelming, unfair and unjust.We moved onto some shoe and clothing buying gifts at Target and then 16 Handles, frozen yogurt, for the girls and Roger and Starbucks coffee for Nick and me. Then home for singing over lemon bars and bringing Nick back to his place. Beautiful and soul-filling parts to the day.
And now I should be grading papers and readying myself for my final push of paperwork for the teacher evaluation stuff that is due Wednesday. But this must have out.
Not having your mom on Mother's Day... no matter how close you weren't...makes it all shift. It can't be the same. It shouldn't be the same. It isn't the same. There is a hole, regardless of whether I believe in heaven or not, and I do. It's different not having her here for me to call, to text, to visit, to see, to hug. And since we are coming up, in the next few weeks, on the 'year-ago' downward spiral of memories of her fight with lung cancer, I feel like it is all raw again.
And I wasn't expecting that. I thought I had gotten past all this. But here it is. And it must have out.
And although I embrace the cards, the gifts, the letters, ...the wine!...from my own kids, I have now moved into a painful portion of my life where Mother's Day will forever be different. And it doesn't matter that I'm 45 and I don't get so worked up about how 'messed up the world is' like I did when I was 24, I do still get worked up that my mother isn't here anymore.
And I guess that is a good thing to get worked up about.
But I AM a fortunate momma who has a balance of Wonderful in her life. I have 4 amazing kids who loved spoiling me today in the forms of loud shrill "HAPPY MOTHER'S DAY!" every few minutes (Kath); making the brunch (husband and Alex); spent the day with me as his birthday too and brought the shared gift of Merlot (Nick); went in on the wine, wrote a beautiful message and texted all day just to 'check in' (Chris). The answers to the girls questionnaires about me made me giggle from "How old is mom?" "25." Thanks Kath. To "what is mom's favorite outfit?" "Her Fahrenheit 451 t-shirt and jeans." (I should post the questions and answers in another post. They will make you giggle too.)
I am fortunate. But Mother's Day, as I realized today, will never be the same, and I will just need to move on, embracing the good, just like life.every.single.day, and moving on to work on what I can work on and perhaps fix, just as mothers do. Just as mothers do.
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