Wednesday, July 17, 2019

Sense and a Story through Writing, Entitlement and Life Goals

When I began this blog, I thought it was going to be a way to keep me focused on...my writing. I started it in December of 2007 and by January Kath had been diagnosed and life just began galloping on a very different path than I ever imagined I would be on. (Warning: This post is more about writing than about Kath.)

I've been thinking a lot about my writing, about entitlement and about Life Goals.

Writing. I remember sitting at my desk at home and joining an online writing group, doing exercises, and starting to feel as though my energy and voice was returning to my words and stories through a community of very supportive writers. Then while I actually was online connecting to this other self of me, I got a phone call saying that my youngest son had been in a terrible accident in PE class, and was on his way to the hospital. When the school called me though, they actually could not get through because I was online writing and connecting with my New Writing Self (this was before we had a phone line designated for online usage). I live in a small town, the school where I worked and was currently job sharing my position so I could be home with the girls, was also where my kids went to school. They knew who my neighbor was so they called her and she rushed over to tell me to call the school. Nick spent 3 days in ICU and another day in a regular room. I became terrified to be online, in case someone couldn't reach me. I began to obsess over checking my phone, in case something else terrible was going to happen. Sporadically, I found times to write. Eventually our internet changed and we added another line dedicated to internet. But my writing was still sporadic and I always felt a bit guilty if I were writing. Always feeling like if I took my attention off my family...something might happen.

And I also felt as if  I were not Entitled to writing time, if I didn't clean first, grade first, respond to emails first, blah, blah, blah. I was never 'caught up' and since writing was just a 'hobby, ' I couldn't seem to get over feeling like I was not entitled to write.

Writing takes a lot of time. You have to make a lot of mistakes (at least I do anyway!) before you can actually get something kinda-sorta right or at least on the right track. Again, I would tell myself I was worthy, I was entitled to try to write, but the guilt would come back. Who am I to demand my family to do and continue on without me, while I tap out words trying to make sense of either my story or my mind?

Once Kath was diagnosed, if I sat down I fell asleep, or I could never remember where I left off in my story and I either had to re-read everything---therefore using up my few spare minutes, or restart, promising myself I would remember the next time. Writing for me also meant I wasn't researching how to help Kath, paying enough attention to Alex and Kath or Roger, contacting or spending time with Chris and Nick, grading papers, etc. So I didn't feel I was entitled enough to focus on something important to me again. Or still.

Which brings me to Life Goals. My light has been dimming on my writing lately and I have been having internal discussions. Maybe I don't really have a story in me. Maybe I don't have the fortitude to go-the-distance on a story. Maybe if I was 'meant' to be a writer, it would be easier and I would 'find' time. Maybe it would be better off for my family if I just focused on what they need so everyone else can do what they need and want, especially since anytime I do step back or out...whether for an event at school, foodshopping, or the front porch to write, when I return I find chaos.

(Chaos is that my youngest hasn't been hydrating so I come home to melt downs and tears and frustrations. Chaos is that none of the normal day-to-day musts have been taken care of.
Chaos is that when I come home it takes time to bring everything back to baseline. My husband tries, but he does not see the interconnections of what impacts Kath's thinking and planning, he disdains any lists I leave and will instead start an entirely new and huge project which means he loses track of time, leaving Kath, unintentionally, untethered and lost. Chaos is that making up for the time I was gone or writing, takes longer than if I had stayed in the first place. I am 'on' 24/7.)

So, I tell myself...get up early. Or write after everyone goes to bed. This is your Goal, Veronica, make it happen. Geez, how many times have I heard from people-- who do not live in my world-- "We all make time for what is important to us." That's a pretty platitude, but when one is trying to raise children, and when one of those children has disabilities and you are trying to make sure you raise her so she can exist in this world without you...there is no Me Time, or Entitled Time, unless someone else takes your spot, holds back other things for you and allows you the space and the time to do that...and makes sure that things run as if you were there...otherwise, when I do come back in, the catch-up time almost always makes it not worth leaving/stepping back in the first place.

So, what do I do? Seeing as Kath needs me to sleep with her because she is afraid to sleep by herself---she, and I, still have some trauma from those scary nights before she was diagnosed with epilepsy and put on medicine (see previous post) when she was having seizures while she slept...so if I get up any earlier, so does Kath. That's not ideal, Kath needs sleep. I have gotten Kath to allow me to read to her at night, tuck her in, and then allow her to fall asleep by herself so I can spend some time with my husband and Alex. Roger has become involved in plays and their rehearsals, and Alex usually has homework, but this summer, after the girls' dance classes and their play rehearsals, we have been watching 'Game of Thrones' and watching the evening news, discussing what is going on and what our responsibilities are as citizens. During the day...it's a myriad of activities and driving and such, and now there is a puppy. Oh boy.

So, what do I do? Do I give up on writing, on a Life Goal because I don't feel I am Entitled to it when I have such a huge responsibility? My gut says, No! What kind of lesson is that?

But my energy and my brain say, "As important as my Life Goal is, Kath needs." Perhaps there are moments I can steal and try to create Sense and a Story from writing, entitlement time and space.

There are always distractions. Kath will always need me. There will always be distractions and the tide of chaos will not likely to be held back for more than moments at a time. But it has me wondering and trying to find the strength and fortitude to make up my damn mind. I'm not getting any younger. If I don't attempt to push through the crinkly and shiny times and distractions, will I be a 'wannabe?' (As in "I wanted to be a writer...".)

Or will it be like when I was a young and pregnant mom who decided that *if* I did not return to school to be a teacher, my sons might feel as though I gave up on my dreams or would they feel guilty because I let myself be stopped? Now that I am an 'old' mom, if I don't push through and find myself in my writing, will Kath one day read this, or find out, and feel sad? I would rather she and Alex (and the boys) know that *because* of them I did push through and write...whether it amounts to being published or not. I would rather walk my talk.

And somehow, walking myself through the talk helps to fortify me to push through and make my steps, one at a time, to perhaps making Sense and a Story. Funny how writing down one's thoughts often can make more sense of one's thoughts, and make them more organized. Wish me luck. Here I go! Again and Still.

Saturday, January 19, 2019

Before-Air, Normal-Air and Post-Air

Eleven years ago next month I felt my head and heart break into pieces. I heard the diagnosis that Kath had survived an in-utero stroke. Years later she told me she heard me ask her to stay when she was ‘somewhere fun’, and so she did. I always pictured that was when she had the stroke and she decided to ‘stay with me’ because I asked. I still think that she made a choice to stay, even if the origin story may have altered; yesterday we got some answers to questions that we didn’t even know we had.

And my head and heart broke again. The mosaic pieces that had fused together into our new reality for the past 11 years, shifted and shoved, fracturing again, until I felt breathless and paralyzed all over again.

Let me back-up. Last spring Kath started to have blurry vision episodes. At first I thought she just needed to learn how to blink out sleep, I often have to walk her through learning how to do tasks that come more naturally to others. They lasted for seconds. Then the descriptions started to sound like optical migraines, brought on by stress. We spent 6 hours in the ER in June (the same day as Alex’s 8th grade formal--she had to get ready for the night with the help of my friend Jeff and her father), while Kath had tests and specialists. Nothing nefarious showed up in the results, nothing at all.

We went home and all issues stopped over the summer...seeming to prove school stress could have been a catalyst. We spent the summer in and out of more specialists’ offices, everything seemed to continue to point to optical migraines. No issues all summer.

In October things started again. She had been sick on and off since school started. The girl who flicks off any cold or virus could not catch a break. The migraines started up, but never at home--until Thanksgiving when I finally got to witness one. Night terrors began too. An ear infection. Then Christmas break was the flu, another ear infection, more night terrors. A visit to the neurologist started a ball rolling for new testing.

January came and the sickness seemed to morph and continue, she could.not.shake.it and the migraines and the night terrors started to amp up. A chest xray was done to rule out pneumonia.

In the beginning of January Kath had an EEG and an MRI and both tests came back normal...well, if ‘normal’ means no real changes since her last one in 2008. However, we planned on doing an in-hospital EEG to try to see if anything would show up if we had a longer window. All forward. Kath and I started yoga, meditation breathing, walking more, focusing more on hydration, and cutting back on activities when she seemed too tired.

I was beginning to feel like we were walking through high marshy land. I’d pick my leg up and the muck would try to suck it back down so I would have to use more strength with every step, only to put my foot back down in another spot and have to repeat the process and struggle. Every day, every step, every night, I didn’t know what to expect. Puberty? 6th grade stress? Dehydration? Not sleeping well? Not eating enough protein, or bananas, or…?

I was trying like hell to WILL everything to fall back into place.

Last week, another night terror. This week I had a root canal Tuesday, so I missed yet another day of school after missing so many days of teaching the last few weeks for her sicknesses. Then Kath came home exhausted and actually fell asleep, and soundly too, on the couch. I made excuses...she has been out sick, still not feeling well...did she take her vitamins? How about a protein shake?

That night another night terror. Wednesday morning she seemed a bit foggy and struggled to process, but I hoped she would be able to start to push through and not have these night terror things have so much control over her or to take over so much of her life. I gave her advil, made her eat protein and headed to my school. Roger drove her into her school (my brakes were grinding and the auto class at school was going to work on my van). Roger texted and Kath called me 20 or so minutes later, to tell me she had another ‘optical migraine.’ I could hear in her voice that she was exhausted and my mom-alarm bells started to ring. I texted Roger back and asked him to call in and go get her, to bring her home. I emailed her school nurse and I told her Roger was coming to pick Kath up; she called back and asked if I would be okay with pulling Kath from class so she could rest. I agreed. Roger came to pick her up and boy, was Kath so mad. I spoke to her on the phone when I had a break and she understood, but she wanted to stay in school!

Then she had two more episodes in the next few hours. An hour after the 3rd episode I got the message (I had been teaching) and I had Roger call our pediatrician. (He thought since she just had all those tests done that there was nothing they could do). Time sped up into overdrive from that point on. The doctor suggested calling the neurologist and within another hour the neurologist called me and told us to head to the ER, and to plan to stay in the hospital for at least 24 hours.

While students were meeting in my room for Key Club, I began to try to make lesson plans, figure out what to do while trying to breathe through flattened lungs. My Hall-mates (thanks for my goodie bag and cards too!) came to my aid with, “Ok, what can we do?” One even lent me her car! (The mechanics class hadn’t been able to work on my van and I was afraid to drive it all the way into Albany. Thanks Colleen!) I went to speak to our school’s secretary to set up a substitute and she even did the emails that needed to happen (thanks Sharon!). Our Kiwanis liaison oversaw the Key Club meeting (thanks John!) and I headed out the doors. I ran home to get packed and Kath was sleeping; my warning bells were now pretty loud.

We headed to the new Childrens’ ER at Albany Med--the most soothing and calming experience, especially when one's adrenaline is running high. We told our story repeatedly to a variety of nurses, Kath smiled, we watched “The Greatest Showman,” talked, and then, after Roger went home to pick up Alex from dance to tell her what had been happening, Kath had another episode, her 4th that day. The nurses were trying to put an IV in her arm, but she got nervous, then her veins seemed to disappear. Kath said, “I’m seeing blurry” and then she pulled her legs up. Thankfully the nurses were there so they could see to document it too. She was alert the whole time, she even spoke and answered the nurse’s questions, but she couldn’t see and she couldn’t seem to relax for about 20 seconds. Then it was over. The doctor who came in, who immediately said this was not his field, said it didn’t seem to be a seizure because she was so present during it. I relaxed some, we finished watching “The Greatest Showman”...the first of THREE viewings in the first 24 hours there, and waited.

We got a room at 10:30pm and I began to see that this would not be a simple straight 24 hours at the hospital. The next day we still had not seen a doctor, the EEG had not started, but neither had she had an episode nor a night terror.

I was a bit of a fraidy cat. I did not think it was silly or maddening that nothing had started even the next morning, I knew they were watching her. I also knew at this point, deep in my gut, I knew that  things were going to shift in our lives, and I could not control it. I felt like I was trying to dig my heels in and not go down the path I was being dragged down, knowing where it was leading. I was taking big gulps of Before-Air.

Soon after, before the EEG had been set up on Kath, our neurologist spoke to Roger and me and informed us of the start of our new world. Upon closer inspection of Kath’s recent MRI, and because of vast improvements in technology, her scans were more defined. They showed she did not actually have an in-utero stroke, instead she has Congenital Brain Malformations. The two malformations presented the same kinds of symptoms and challenges as what we have been dealing with her stroke diagnosis, but they also open up a new world of issues.

Kath had the EEG probes placed, a video was set up and off we went. We had a wonderful roommate who had to move down the hall when the recording began (privacy issues). It is nice to have one’s own space, but it’s also nice to have another mom nearby who understands, with her heart and soul, the bare, raw fear of not being able to fix or control anything with your child's health. I visualize it like your child has a rope tied around their waist and they are being pulled along a dangerous road with cliffs on the sides and all, and you are behind them, holding on with sweating, slippery hands, trying to not loosen your grip, trying to not let them fall off the cliffs, or veer into danger...and still trying to pay attention to the other people in your life. And your career. And the oil delivery, bills, finances, snow storms and on and on.

During this time, a shining spot was that I was honored to see two of my former students working in the medical field, how wonderful was that? Little breaths of Normal-Air.

The EEG did record for about 24 hours, Thursday and Friday. And despite Kath not having any night terrors, nor full out ‘migraines,’ it did capture what the doctors needed to see. The one time she had blurry vision, she didn’t go into a full ‘migraine,’ but it also did not even register as anything on the EEG.

Despite this...there were many other times Kath registered seizure activities, but the video showed no outward physical signs. And over the night, despite not having any outward reactions or ‘night terrors’, she had ‘misfirings’ and lots of activity. No wonder the girl is tired, she is having seizures and we don’t even know it, and she doesn’t even know it.

The doctors did not need to see anything more to know what they could do to help her and to diagnose it. A new additional diagnosis: Epilepsy. She likely has been having seizures her whole life, but the perfect storm of her illnesses, puberty, lack of sleep, has not helped her.

So. Post-Air. We now embark on anti-seizure medicines. And a whole new round of research begins as to what the Congenital Brain Malformations polymicrogyria and cerebral heterotopia are, and what I need to do to make Kath’s life as normal as possible. She still has cerebral palsy and the issues that brings as well.

She is the same girl I had before this new diagnosis, but now she has more fragile edges. It’s even more important to get a good night’s sleep and eat right. It’s even more important to drink enough water and take her medicine. Now her new normal has to be rediscovered, as does our family’s and mine.

I’m feeling shattered, splintered, breathless, guilt-filled, but unlike the first time eleven years ago, I know that those parts of me will recover and become a different mosaic. And although I can see that Kath has lost her confidence and even part of her identity '(I’ve always said I was a stroke survivor, what am I know?' 'I have e-ep-epilepsy, what does that mean?' 'I could be having a seizure right now?!'), she will pull up her resilient-self and soul and live her best life being the amazing warrior she is.

Thank you to you all, the ones I have leaned on and needed these last few months and this last week, and those who read, follow, and support from varying distances, while I try to hold my seams together. My guess, if history is future, I will take a bit before I start getting some stride back, so thanks in advance for your understanding and support.

Tuesday, November 13, 2018

It's November again.



Every year Kath’s birthday is one I joyfully celebrate, but even this many years since her diagnosis, I still struggle with. Sorry if you have heard this before and I sound like a broken record. Maybe if I write it out enough times it will stop taking my breath away.

I am blessed she is here. She almost wasn’t.

The day of her birth was one I remember well, waiting around for the time to leave the house and drive to the hospital; she was a scheduled induction. When it was finally time to leave, off we went. During the delivery I remember a time when I started to look at everyone and everything as if they were all far away. Roger didn’t notice anything was amiss, but I still remember the eyes of the nurse as she realized things were going sideways. My blood pressure was dropping, Kath was coming out face down and I felt like I suddenly had a choice to make. I made the effort to swim back towards the pain, my baby, my life. Sounds overly dramatic, doesn’t it? But to me it has always felt like a very pivotal moment. And I have never taken it for granted.

When she was a baby, Kath was the easy baby. She didn’t reach and grab things while I ate or cooked or shopped. She was on my hip more than any of the other kids, she always wanted me to hold her -and it often truly had to be me that held her or she would be very upset-, otherwise she was smiley and happy.

Months before her 1st birthday I remember looking at my other children’s first calendars- the ones that you record milestones in. Kath was missing lots of milestones, but every child grows at different rates, I wasn't too worried. I figured it was because she was on my hip so much. I figured it was because she had older siblings who did everything for her. I made lots of excuses. But as time went on...as her oldest brother went to study in Nicaragua and her other brother went to college in Rochester...it became more obvious that something was wrong. At her first annual appointment, our pediatrician said that although she didn't see anything amiss, she trusted her parents. County Early Intervention therapists soon came to the house to evaluate Kath and before they left the porch, they said she needed intervention, although they didn’t know why. Three months later Kath was diagnosed having survived a massive in utero stroke.

My heart has never returned to its normal beating. And every year around her birthday it gets even more erratic before it settles back down. Some of my friends, those who have children with disabilities mostly, understand, but I think most others, including some considered closest to me, think it’s just my “November” mood.

Despite knowing logically that Kath’s stroke was not my fault, I am guilt-filled anyway. I couldn’t protect my girl...when she needed it most...when she was in my body. How basic is that?

When Kath was about two years-old, she stopped me from reading one night and said, “I am glad I stayed.” I asked her what she meant. She told me that she remembered when she was in my belly, then she remembered having a good time playing somewhere, but she heard me call, heard me ask her to stay with me, not to leave, so she decided to stay. The wild thing about all of this is that one day while I was pregnant, I didn’t feel the baby move and I had a bad feeling. I drove myself to my doctor's office and the nurse couldn’t find the baby’s heartbeat or register movement either. She left the room to get cold water to help make the baby more active, but when the nurse left, I had a bad- bad feeling. I started rubbing my belly and begging my unborn baby to “Stay with me. Don’t leave me.” I didn’t tell anyone that because ...well, it sounded crazy...but Kath apparently heard me. And she stayed.



So, every November I celebrate and I struggle. I celebrate the brave-little-engine-that-could girl who was gifted to me and I struggle with the inexplicable other components of guilt, of what-ifs, of having dodged a soul-crushing-grief bullet. I always strive to be that upbeat embracer of Good and Hope and Light, but there is also that part of me that knows that if I don’t give myself time to breathe through these moments, to let them be felt and then to let them go... they will fester and decay my innards, my heart and my soul. Luckily for me this is the month of writing (National Novel Writing Month) so I get to release my thoughts on paper and try to write though all of these emotions. Most years I see progress. It might be easier if it didn’t get dark so early, but she stayed and for that I will always feel blessed. Happy birthday to my beautiful Katharina.

Saturday, May 20, 2017

My Lesson too for my 168 hours a week.

When I was younger my days seemed to last longer. I felt like I had more than 168 hours in a week.

Saturdays and summers were eternal - never feeling stuffed-to-the-rim-with activities and only mere moments of calmness, like nowadays. Instead they felt full and nutritional, like a well-cooked healthy meal that is savored over good reconnect conversations. Not swallowed fast and unchewed, eating for survival.

Yesterday I had my students create a list of their life goals - what do you want to do between now, and oh, say, ten years from now.

My list? (no particualr order)
~ Catch up on bills
~ Write my book, then bookS
~ Get healthy
~ Be more present in my kids' lives and my husband's life, as well as my own
~ Travel, anywhere and everywhere
~ Read more
~ Volunteer
~ Garden
~ Be a better teacher

Then I asked my students to write down the activities and things they actually do. How do they spend their days?

Mine:
~ School
~ Grading and planning
~ Key Club
~ My Phone
~ Taking care of the house and bills
~ Sleep
~ Eating, meal prep too
~ Homework with Kath
~ Reading about education and writing
~ Schlepping the girls around for school and activities

A few students said they spent time crying and napping. I thought they were kidding about the crying until the second class came in and a few said the same thing, then I felt really bad about shrugging off the first class. These kids have more going on than we may know, and possibly struggle with how to handle it all.

I noticed I didn't even have reading or writing on how I actually spent my time. How on earth will I write that book if I don't put my butt in the chair and write?

Next step was to reflect honestly on how much time (in minutes and hours) we actually spend on the ways we spend our time each day, then add to figure out how much time we spend each week.

Some came up with more hours than the actual 168 hours there are in a week, "Many of my things overlap!" Eish.

We then reflected on whether we were happy with how we spend our precious seconds and hours, and whether they were actually leading us towards our lofty Life Goals and Perception of How Our Lives Will Look in Ten Years.

I brought up that people say you are, or you become, what you are actually doing right now. We don't just wake up upon graduation or our ten year mark, like a butterfly from a cocoon, and voila! we are and we have the life we dreamt of. It's those day-to-day decisions of how we use those hours, that create that life we want.

We discussed how school and homework time is the dress rehearsal, the practice, before we go on stage, run out on the field of Life and what time we put in now shows up later. As well as how efficiently we use our time doing school and everything else.

Then we also discussed the reports I heard and the CNN report they watched. The report was a reporter asking high school students why they were always on their phones. The students said because people would post things about them and they had to defend themselves, plus, they needed to stay informed or they would feel like they were out of the loop. The CNN report we watched together showed a man who designed apps with the intent of making them addicting.

Between the crying and napping and the intense need for instant gratification (how many likes) and the need to be in touch at alllll times, their use of technology is different than mine, for the most part. There's not a lot of calmness or true reflection or true breathing time for any of us.

I use technology to:
~ check my school and home email
~ check social media: Facebook, Twitter, Instagram
~ check news : NYT, NPR, CNN,WaPo
~ check banking
~ check text messages
~ shop

I also see how friends are doing with surgeries, treatments, and children.
I also find new recipes (that I never seem to have time to try).
I find new ways to organize, handle stress and help inspire me.
I find support from other stroke moms, and overwhelmed teachers and moms.
I search out news.

My students feel an intravenous need and feed of self-value, self-confidence, self-reflection and sometimes even a moral compass (for good or bad) through the devices---those are things that I earned and found in much different ways when I was growing up.

When I was a kid if I wanted to talk to friends I had to ask if I could use the family phone, that was connected to wall, and tell my parents who I would be calling. If I wanted to avoid sitting at the kitchen table while talking, I could stretch the cord under the basement door and freeze on the stairs, but I always knew my family could hear me through the door or open the door at any moment. Oh and I could be told to get off the phone at any point, I had limited phone time. "You spent enough time on the phone, go do something."

My students have hundreds of unheard and unobserved interactions every day. Oh, except for those conversations snap-chatted, or screen shot, then posted on the un-erasable and unforgiving internet.

Their cores and morals, as well patience and understanding, are tested repeatedly with every interaction...in a bubble without (for the most part) adult supervision. A moment of weakness, unkindess, bad judgement is carved into documentation as if they were adult politicians of current day, as opposed to teenagers working their way through life's mistakes of youth.

And we are letting them. Mostly untethered, or with false tethers.

We let them have devices because "everyone else has them."
We trust they will be good, forgetting this medium has a long memory and mob-mentality.
We are also so busy on our own devices that it's become an easier way to communicate and connect, even with the people who live in our homes and hearts, while also staying busy with our own stuff.

I decided last weekend that my hands---like Granger's Grandfather (from Ray Bradbury's Fahrenheit 451) needed to be doing more creating. My days were feeling too frantic and unproductive.

So. What now?

I didn't have devices growing up.
I read a lot I played SPUD on summer nights with the neighborhood kids. I caught lightening bugs. I rode my bike all over and knew my town. I wrote stories.

My boys (now 29 and 28) didn't grow up with devices, though they did have game systems. I limited their time at my house. They rode bikes, played ball games, street-wide hide-and-seek, built forts and god-only knows what else.

My girls (13 and 10) don't have devices and I'd like to keep it that way. They are usually at school (lots of free phones, or I email the school secretary (love that woman!) and ask if at some point in the day she can get a message to my daughter if plans changed from when I dropped her off in the morning before I pick her up) or they are with me, or another adult. I see their peers with phones in their hands as if their young intravenous feedings have begun---the books, the balls, the items noticed and picked up from the ground, forgotten as the technology begins to wire itself through their brains.

Me? I am absolutely ridiculous with my use. I know it. My phone is always on me (though as I write this on my front porch, it is upstairs, far away my hands which perpetually need 'just a second to check.' Yeah! Small steps!)

This person who lists her life goals as wanting to write, garden, exercise, travel, stay present found that when I was honest with how I spend MY 168 hours a week...there was a lot of wasted time reaching for and getting lost in 'just one second, let me check....'

So, one of my new goals is less phone-in-hand-time. I even hand-wrote my rough draft of this, with my arthritic thumb killing me, but a change needs to happen. If I want my kids---by birth and through school, to use their 168 hours more efficiently, with more joy and with a sense of purpose, than so must I.

I'll let you know how it goes. Want to join me?

I know this isn't going to solve the world issues or instantly make me a better teacher, mother or writer, but I am hoping it will put the spot light of my life back on doing what's important to me. Maybe the things that distract you are different things.It might not be your technology use like me or my students.

I am just tired of being controlled by my distractions.

Look, I just spend three writing this. I haven't written this long in a long time. I'd say it's a good start as I try to reclaim some of my 168 hours from a void.

Sunday, October 30, 2016

Unclogging. A sneak peak at the puzzle picture.

I felt the transformation on the way out, just as I did on the way back home from the writing conference.

On the way to Albany Airport, to Chicago and then to Vancouver and finally to Surrey, I felt the change from the all-encompassing wrapped-my-soul role of mom, Mrs Gaboury and the woman my husband rolls his eyes at to...me. To Veronica Steiger Gaboury, the writer from New York, the States, with an almost visible parenthesis around my location that apologizes for the horrible election everyone else is watching.

While I was gone, I didn't miss my roles like I thought I would. That surprised me, and probably anyone who knows me. I had said my goodbye's, wrote letters, left behind 3 pages of notes after trying to show for the last few weeks, "this is how I do it." And now it was someone else's turn to take over and I was on my way. For at least a couple of days.

Almost like a symbolic dip into a transformative pool, I stood at security and took off my shawl wrap, my scarf, my bags, my boots and immediately set off alarms, needing further clearance to leave.

For months since I pushed the registration button to the Surrey International Writer's Conference, I second guessed whether I should back out, get a refund, go another year. Despite the fact that I knew so many people who were attending this, so many from so far. Who knew when we would all reconvene again?

I was worried though because a couple of years ago I was asked to present at a National Conference for the National Writing Project in DC. It was a round table discussion with my fellow writers from my local Capital District writing group. At the last minute I let my group down, though they were gracious, and I bailed on them, feeling unable to leave the family behind to fend for themselves.

Because of Kath's disability she can sometimes be a handful for her dad or for others who may not understand her triggers and her rebalancing needs. Right before that trip things flared up and I couldn't imagine how many steps backward Kath's progress would take and how hard seeing the chaos would be on Alex. I bailed.

So here I was planning on going away again, not to present this time, but to attend, meet friends, to learn. The cost was much more. There would be much more traveling. I would be going with strangers I only knew from online. What was I thinking?

All summer I tried to prep everyone, including myself, and in-between I was cloaking myself in fear and doubt, thinking maybe I should cancel. I didn't allow myself to get excited or fully commit to the anticipation of this experience. I didn't think I could handle another huge disappointment if it didn't work out. School began and the girls and my schedules are pretty packed, how could I leave so much on their father's shoulders when he didn't know the lay of the daily land?

I think I may make it look easy. (Alex told me when I returned and she was giving me the play-by-plays of each day, that Roger had said, 'It's hard being mommy and daddy,' but she said, "He was just being daddy." Yet he did keep everyone alive and that counts!)

Finally, I decided to cancel my trip. I hadn't made flight arrangements yet, the hotel was sold out, and I had just hired a math tutor for Kath and signed her up for a science and an acro class. Alex had a comp workshop weekend coming up right after, Kath's birthday party needed to be planned. I went online to the conference's website to cancel and found out the deadline was the day before. I actually considered still canceling (just not going), losing my money and saving myself airfare and hotel, as well as, stress and incidentals.

But a friend of mine, who also has a chaotic home life like mine, told me I had to go. Had to. The family would be ok for 4 days without me, but that I needed this. I listened. (Not about going to the Halloween party this weekend, but to this I did.)

I committed. Then everything started to click, like puzzle pieces when you finally understand what the picture is supposed to look like. I suddenly had two sets of roommate options. Flight plans seemed to work out without too much jiggling. A shared cab from airport to hotel and a ride back to the airport at the end of the conference all worked easily into place.

I made plans for the house (did I mention I wrote 3 pages, many drafts), cancelled some things so my husband wouldn't be overwhelmed by my daily routine, made lesson plans for my 6 classes, discussed at length what the girls should do, how they should handle things, and packed my bags. (The only major thing I ended up forgetting was my inhaler...I didn't actually forget it, I packed one that didn't have enough puffs left to it, but after a day of panic, my breathing relaxed and I actually forgot I needed it, though I did meet someone who lent me her emergency inhaler just in case.)

Once things started to fit, the transformation began. I began to let myself get excited.

I have dreamed of going to this conference for at least ten years. I have followed the stories of online friends who went and how energizing this conference is for writers who do most of their work alone, but grow most by interactions with others.

I arrived at the hotel, checked into the conference and ran with my bags to the first Master Class. It was with Diana Gabaldon one of my favorite authors. The class was on How to Write a Sex Scene. Hmmm. I don't really need to write any scenes like this due to the genres I usually write in (young adult and non-fiction), but I just wanted to be in this class with the woman who helped me to survive some pretty intense times in my life: a divorce, a diagnosis for my daughter, my mom's death, my diagnosis, etc. I tried to absorb the 'what-would-Claire-do' factor (Claire is the main character in Ms Gabaldon's books and one of my role models) and I looked around and found some of my writing friends who always accept me to the online writing world despite how long I am missing.

Meeting up with these people I know through my writing was like a reunion; a coming home.

This experience was one of transformations, one which was the bud of a feeling and thought that perhaps my own words could become strong enough and perhaps I could write my Tabitha/Traveling Trees story and others.

For every person I met, as This-Me, it was like some archaeologically dust was brushed off and I became more uncovered and I loved what I saw. It was in my eyes, my walk, my heart, my head, my energy. I felt like I hummed at a different frequency.

I worried though that not enough dust was uncovered to complete the transformation, or to allow me to continue. It was only 4 day,s after all.

I was partially correct because once I came back it was hard to assimilate this new me with my many other roles. I returned to my old roles+plus, as though I was expected to make up time for daring to step out. Many friends asked me supportive questions about my journey. Many followed my trip on social media. My girls clung to me asking specific questions and wanting to see my pictures and hear my stories. My students were excited for me. My sons contacted me asking me about the journey. Not everyone asked or was excited, but I buzzed for days.

On the way home, after one hour of sleep, I wrote. Ten pages, handwritten. It was a rough draft for this blog, it was letters to my girls, it was a journal, so, not my story, but it was more than I have written in probably a year. I have a lot to do to make sure the dust doesn't gunk the cogs of my brain feeding the fear and self-doubt. Writing is the frequency I need to hum with. That much is evident after this trip.

More to follow....

Tuesday, July 5, 2016

A year tomorrow. That was my last post- a year ago! That alone tells me how little I have emphasized my own writing time. I know it is my 'sanity' time, I know how important it is but I always put it on the bottom of the 'family's' priorities (even though I know my family does best when I am also a priority) so it does not often make it to the top. And when it does, it takes me so long to return to my Writer's Mind that I waste my time circling and circling and not writing anything of substance.

The problem is...me.

There is always something that pulls me. Pulls at me. Pulls on me. Pulls towards me. Grabs my hand and tries to drag me, but what I am going to work on is my writing-- the 'thing' that strengths my resolve and determines who I will be. I try to always make sure everyone else has Time for their events and activities, but I shuffle myself back in at the bottom of the deck.

I see the Facebook Memories of This Day and I see that many times I have said this.

Many times I have tried to shame myself into writing. I've tried to coax myself. Sometimes I have scared myself into writing and also away from writing. Mostly...I see that some of the same things I said a few years ago are still relevant: I have this story. I have this idea. I want to write. I think I can do it. If I try. Hard. If I give myself permission to fail, fall and time to recover and get back up.

I have finally grasped some form of Control in my life. Things don't always feel like we are flailing...even when I have no idea where the money will come for x, y, z or how I will juggle the schedules of the girls, husband and myself or, how I will handle a regular day in our world. Things are still flailing and out-of-control, but I have found a better way, most days, of dealing better.

I was thinking back, my husband had made a comment about how I was being 'controlling'...like when things were moved or not put back where they belong and I got ansy; or when I said certain things, like meals, had to happen within a time schedule for Kath; or when I got upset about any kind of mix-up in Kath's schedule;...and I realized that I was indeed controlling about many things now, that before, I never was. I didn't have to be once upon a time. Before Kath, life moved along or things didn't get done, no biggie, or just a ripple of a deal. Things got done or they didn't, they didn't undermine months of scaffolding and work. But since Kath, there always needs to be a 'lesson plan' or a game plan or an explanation of Life as We Do It. And since I have figured out a bit more of how Kath's brain works, I have found that my 'whatever, it will all work out' way of being, my very essence of thinking, had to change or she wouldn't have a chance to be able to handle this world and its pacing. It had to be me helping her step from her brain to this world, who else could it be?

I had mostly been the kind of person who didn't stress too much over cleaning, organizing or schedules. I liked the ebb and flow of doing and moving on. But Kath and her stroke-brain gets stuck, her engine will continue to rev and she can't figure out how to get unstuck, unless I show/tell her, unless I explain step-by-step "Ok, so what you should do now is try to think of what you could do next so that you can get the rest of this homework sheet done, and not allow yourself to get stopped here at number 2 for the whole night. What can we do? How about we leave this and come back to it? Or let's go get a drink of water and take a little walk." And then we talk through the process of How and Why. Step-by-step. With me right there. Everything is step-by-step, organized, goal-setting, otherwise everything becomes an insurmountable mountain that immobilizes her and makes her shut down.

That's what I let happen to my writing, it became a paralysis, an insurmountable mountain. I couldn't even jump into conversations with my writing friends. I couldn't figure out my next steps.

I talk about wanting to write. I sit down and tap out a few sentences and then I get called away, and it's too easy to stay revved, distracted and stuck. So I stay on the peripheral and drown in the paralysis, hardly even remembering what I am writing about anymore. I am almost afraid to even try. How did *I* get to this spot?

I have Kath on a tight leash of, 'Ok, go brush your teeth and go to the bathroom, I'll be up in a minute." And then after 5 minutes I call up, "How's it going? Ok, you need to refocus, brush your teeth now." I have to check-in and continue to build small scaffolds so her brain can soon learn to go through the motions and she will know what to do without my check-ins. But I also give her, especially in the summer but also all year, chunks of "go play" time. And each summer I see her unfold slowly, at first she wants to watch a movie, she fears the freedom, then before I know it, I struggle to get her to eat because she has immersed herself in some imaginary play, relaxing into allowing her brain the freedom to roam.

I had to learn and relearn Kath's brain to help her to be able to make a place at the World Table, or at least her classroom and playground. I had to reteach my brain so I could scaffold teaching and learning for Kath...not just for short, 'minor' issues, like how to approach a homework assignment, but all the major Life Lessons too, especially Resiliency. I think I have had my brain on a short leash, always focused on 'what is next on our agenda and how can I break it down to build her up" and now I have to teach and learn how to unleash my brain and let it 'go play' because I appear to be stagnant, revving and not accomplishing what I should be able to do in my writing at this point in my life.

So. This blog looks like it will rebound a bit and be about getting myself back into my writing like I originally intended  (for at least this summer) in addition to our journey with Kath and her brain journey.

Monday, July 6, 2015

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. 

Sunday, February 22, 2015

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

Tuesday, December 9, 2014

This was the speech I was asked to give at the Women's Business Council of the Albany-Colonie Regional Chamber today.

A few months ago Angela Tobin asked if I wouldn't mind speaking for the Bus Stop Club. I do not think I am a good public speaker-I am great and more-than-fine (and humble) in my classroom-but in front of other people who I have one-shot to make an impression?? I don't think I am good at first impressions. But because it was Angela and because it was for the Bus Stop Club I did it. I drove through ice and snow and I spoke and cried in front of people who had supported the Bus Stop Club for the past year. I made them cry too, so I think I did okay and I think that maybe they know a little more of what their financial support means to their Adopted Nonprofit group, the Bus Stop Club. And as the year closes out and you might be considering donations, please consider the Bus Stop Club and other groups like this. 

This is what I said.

Thank you for welcoming me here today to hear what the Bus Stop Club means to my family and so many other families.

Let me start by telling you a little about me. I am the kind of person who takes great pride in being able to take care of myself and my family. I can actually be a little crazy about it, defensive even, if someone seems to suggest that I can’t do it all.

Or at least that is how I used to be before I had my last daughter Katharina.

I am a mom of 4 children. Chris is 27, Nick is 25, Alexandra is 10 and Katharina is 8. I am a high school English teacher. I am co-advisor to Key Club (a Kiwanis group), A World of Difference (a group based off the anti-defamation league), and a group called the Knit-Wits (who like to sit together on Fridays after school and knit, crochet or learn how to knit or crochet). I also advise a group of kids after school in a writing group. I am a member of the Capital District Writing Project. I am used to being the person who holds it all together and still finds time to sit on the front porch with a cup of coffee on a summer morning.

But 8 years ago my son, Nick, who is now 25 had an accident in high school that resulted in a Traumatic Brain Injury, months before I had Katharina. Katharina was diagnosed 15 months after she was born with having survived an in utero stroke, resulting in mild cerebral palsy, vision field cuts, cognitive delays and speech delays.

My world was flung into complete and utter disarray for a few years. I went through a grieving process as I watched my honor’s student son struggle and eventually drop out of college due to his concussion issues. As Kath’s therapies increased and we began to be able to feel around the outer edges of her diagnosis, I struggled with just being able to make a meal, pack a lunch, and pay the bills. I read every piece of literature on strokes I could, I found a wonderful group of parents online who eventually moved to Facebook to share stories with. I grieved the loss of the life I imagined Kath would never have access to.

Slowly over time I grew beyond most of that and my son traveled down a different path, not the one I envisioned for him, but one he has found success and validity on. And I realized that my little girl was a warrior in her own right who was not defenseless. I learned to embrace more freely who she is and how amazing she and this path we are on own, is.

I have met some of the most amazing people who have stayed when it would have been easier to leave and others who I found because we travel the same road.

But one of the most amazing and wonderful people who has blossomed right before my eyes is my daughter Alexandra. While Chris and Nick—awesome siblings in their own ways--have only lived at home for a short period of time since Kath was born, Alex has been the one who has been there every single day that Kath has been alive.

Alexandra is now 10. But she has a soul that is old and wise. And she always has. From the time Alex first met Kath at the hospital, a few hours after she was born, Alex has been linked to Kath in a way I have rarely ever seen except in fiction movies. Alex has always been a Little Mommy to Kath. When my mind blew at the fact that Kath had a stroke, Alex was solid. Poor Alex had to take on roles for older people…she found that if she didn’t put a paper in front of me with a pen in my hand, I probably wouldn’t remember to sign it. If she didn’t remember whatever was going on and needed for school and dance, it was forgotten. It was like that for a couple of years as I put everything I had into understanding strokes and what could be done around the massive damage that Kath works around.
Not once did Alex ever act out. Not once did she throw herself on the floor and demand that she get equal attention. Not once did she blame me if she missed out on something because I forgot. She would rub my back, like she was the mom, and tell me, “That’s okay, mom.”

Who does that at so early an age?

For several years we had Kath’s therapies at home. I was job sharing so every other day I was the one sitting on the floor learning how to make Kath’s muscles want to move and her brain engage; on the alternative days it was my friend and sitter; and every single day, it was Alex. She watched the therapists and then she played games with Kath that made Kath use the same skills she just learned.

Who does that at so early an age?

Alex could get Kath to do things on some days that the therapists and I couldn’t. Many times Kath…even now…will call for Alex to help her before she will call for me or her father.

I often kid around and tell people that Alex was really supposed to be MY mother and I was supposed to be her daughter. Over time my world has righted itself and I am back to being able to think and plan better than those early years. I remember when I was starting to come back and I got frustrated because Alex kept asking me about something, trying to make sure I understood something, and I got defensive, “Oh course I know *that*!” and I realized how far gone I was that she felt so responsible to make sure I got it right.

It was a bit like cold water in my face. I had focused so much on Kath that I often didn’t focus on Alex. After all, she was okay. She knew what to do and how to do this and that…and I then I thought, “Wait a second…she is only 8! She shouldn’t *have* to know all that!”

I was into alternative therapies for Kath as well as the mainstream therapies. We drove, and still do, an hour to hippotherapy…Alex had sibling lessons. When I think of that I cut myself some slack because I think that maybe…maybe…I was not AS bad as I think I was with Alex. Maybe she didn’t raise herself…completely! I did think that *she* needed something that was for her.

I also started to take Kath to massage therapy, the owner of the spa worked to loosen up Kath’s tight limbs. And I let Alex get a massage too, she worked hard with her sister. Why not?

Then one day a retired teacher, the receptionist, who worked at The Ivy Spa told me about the Bus Stop Club. She knew I was trying to make sure that I didn’t let Alex slip through the cracks. She told me this was a group she volunteered at which supported the sibling of a child with a disability.

The second meeting Alex could have gone to was a trip to Target, to go shopping. Each child was given a gift card to pick a gift for themselves. I didn’t send her because I felt like I didn’t know these people who would be taking my daughter on a bus to a store. And what was with this spending money? Huh.

After that Alex went every month. My quiet, shy girl loved going. She got to have pizza! Although I waited in the building, grading papers at a small table at the YMCA, she felt like a big kid, going to the meetings by herself. She had time to talk to other kids who had brothers or sisters with a disability or illness. Many times she told me how much easier she had it than other kids. Every time she felt like she belonged.

The people who volunteered made my quiet, shy, strong girl feel special. They listened to her. They asked her questions. They didn’t make her feel rushed (something I was often guilty of). After a sharing time the kids played games and then they had a choice of swimming or basketball. Alex always chose swimming. She is a fish who loves water…it doesn’t matter if it is 20 degrees outside. She loves the Y’s pool.

When Alex gets in the car after a meeting, she is relaxed and excited. She has talked with other people who ‘get it.’ At school she is an academic. At home she is many things—daughter, sister, Kath’s cheerleader, mother’s helper. At Bus Stop Club, she is Alex. She has a sister who has different abilities, but she is still Alex.

During the last 8 years my family has continued to struggle financially. Because of Bus Stop Club we have been able to take the girls to basketball games. Alex has even gone down to the court at half time and taken shots! We have gone to baseball games! We have gone twice to Six Flags in MA. We haven’t taken a vacation in years so having the bus, the tickets, and meals taken care of for the day made it so we could concentrate on just the kids for the day. My son Nick has even come and shared the day with us. Alex did go shopping at Target last year with her gift certificate and she bought herself something and she, of course, bought Kath a little something.

Alex has not been able to go to meetings this school year because she has made her dance school’s  competition team and both are on the same night. But we look each month to see when we get the emails to see if there is something she can attend. And we will keep doing that because we know she will be welcomed back at any time. What a great feeling.

Alex made connections through Bus Stop Club. She felt like she was not the only person in the world with a sister who had a disability and a family that struggled sometimes.

It’s harder for adults to make these kinds of connections, but when the families all sit together in an arena, or on a bus, we may not have deep conversations about the future of the country or religion, but we all know that we are all going through something similar. And for just a couple of hours we are less alone.

And that less-alone feeling that is provided by you, by Bus Stop Club, makes it so we families can sometimes reset ourselves, stop the teetering for a couple of hours, so we can do what we need to do the rest of the time. I will never again believe I can do it all on my own, but I also know that it’s okay that I need and get help sometimes. Thank you for all you have provided my family and so many other families.



Tuesday, November 11, 2014

Stay With Me

I was reading an article on my front porch this morning and it made me sob. November is always tough for me. It used to be that I struggled with this month because it is a light-less month. It feels suffocating to be in the dark so long.

It’s also a month where I start to feel overwhelmed by school work, by the needs of my students, the needs of my family, the lack of time for me. I had to cancel pamper time (I planned at the beginning of summer) for me yesterday because I couldn’t be two places at once. I needed to be somewhere for Alex.

But now it’s also a month where I relive some of the most challenging times of my life.

Kath’s birth day. And the year before and the year after.

The year surrounding her birth was one of my most difficult. My son Nick had an accident the previous February in physical education class that landed him with a Traumatic Brain Injury diagnosis and 4 days in the hospital, 3 of them in ICU. It put the brakes on the life he had been flowing with; he has struggled to come back up to a place he feels he belongs and can get foothold to move forward.

I remember when I was pregnant with Kath and I prayed, as I stepped in to watch a class for a special education class for a few minutes, that I would never have a ‘special ed’ child-- I was so wrapped up in worry about not being able to help Nick; watching as my other son Chris was moving on in college-- and I knew I could never handle what these women, these moms of kids with disabilities, dealt with every day. This stuff, this life I was in, was hard enough.

It was a soul exhausting time and I remember that first night of Kath’s life. I sat crying because it hurt to get up and down with her but I was afraid to fall asleep with her in the hospital bed. Roger had gone home to be with my other daughter Alex and to work on school work. I questioned myself and being able to handle what I had already and now there was someone new who needed me even more. I know now most of this was postpartum, but at the time, I knew how to behave and answer questions to the nurses so as not to raise eye brows. I was ashamed, what kind of mother has these thoughts?

I lay in the dark watching the nurses come and go and I felt trapped. It wasn’t just about not being able to get up and down without pain. It was about my body being stretched out of shape, again. It was about my nipples hurting so much from nursing attempts. It was about putting the hard-fought career I had been building on hold, again. It was knowing that my writing would again take a back seat to my care and love of this new little one.

A woman’s life changes in so many shallow and deep ways. I knew that my breaths would be for someone else. Yet, one more piece of my heart was now on the outside of my body. I don’t think men feel it that deeply.

I lay there feeling selfish, unworthy and very much alone. How dare I be a mom of this miracle, I had this beautiful perfect baby, and all I could think about was what was going to shift in my life?

I’ve tried to tell others but my thoughts always felt ‘wrong’ to share.

We brought her home. My husband named her. My one contribution of her name was making sure there was the “h” in her name (Katharina) and it is the part that is mostly silenced or left out by others. 

Everything changed for me. Child four. I held her and she pushed me away. I tried to nurse her and she pushed me away. She’d stare at me and behind me. She’d smile above my head and I said she saw her angels. But I felt alone.

I took care of everyone. But didn’t take care of anyone. I couldn’t get it all balanced. I put her on my hips and ran after Alex. I put her on my hip and cooked meals for everyone. I put her on my hip and sang to her and danced with her as I drove around trying to keep my head together going to the other kids' events.

My love for her was as deep as with my other children but it also moved me onto another path, a path where I was alone. None of my friends were having babies, except one friend who lost her baby during her second trimester; being around me after that was too painful. I am an 'older' mom. My husband has his career and his own life shifts he was dealing with. When I struggle, I wrap myself up tighter, self-protection-mode. I am not easy to deal with.

There were mornings Kath smiled and my world lit up. And other mornings where she would not smile for anything, she would not reach her arms up for me, she didn’t want me, I thought.

A year after her birth I traveled to Nicaragua to visit my oldest knowing when I came back Kath would be going to start a string of specialists because through it all, I finally knew something was wrong. What made it so she was missing her milestones? I had my other kids’ baby books out and she was far outside their boundaries. I thought maybe she was on my hip too much. I put her down. She sat and watched us but wouldn’t move beyond swaying. If someone came near her she would startle and scream. No one wanted to hold her and I wouldn’t have let them anyway. Momma bear was rearing up.

When we saw her pediatrician in November she told us, “I am not worried yet, but I trust my parents,” and she set us up with Early Intervention therapists. They came and evaluated Kath in December and before they left they said she qualified for services and the plans started, she would start immediately.

Two weeks later, in January, Kath began Physical Therapy. Kath had started to learn that she couldn’t do certain things, like move her arm so Sue taught me how to show her to work around her brain and make memory paths in Kath’s through repetition.

At the end of January we met with a neurologist. He said it was either cerebral palsy or degenerative autism (or something, I don’t recall). I remember hearing ‘CP’ and knowing of two students in my school who were in wheelchairs, I was shaken to my core, deeply. We scheduled an MRI and waited. Fortunately there was a cancellation and two days later we got the call.

Katharina had survived a massive stroke during her second trimester that caused damage to both sides of brain but mostly her left occipital parietal lobe. It meant her vision was probably damaged, she would have cognitive and speech delays as well cerebral palsy on her right side.

This morning's article that made me sob lightly touched on what I felt at this point. I did what I could to live a healthy life, but I still couldn't prevent this or protect my daughter. I don’t do drugs. I don’t drink (I do drink more occasional glasses of wine now!). I exercised, somewhat. I took my vitamins, but somehow this had to be my fault. I didn’t keep her safe and healthy. I screwed something up…and then I remembered my secret prayer to God all those months ago, “Please don’t give me a child with special needs.”

I had done this. I had cursed her with this life because I was so selfish.

I know most of this sounds crazy and unreasonable to most who will read this. I know I didn’t do anything to cause her stroke, but sometimes these thoughts leak through my pores and spill out into my life.

A mother's world changes in ways a man will never know. A father may glimpse at it.

But it is usually a mother's world that shifts and must accommodate the fault lines.

I grieved intensely for a long time, for her and for me. I knew I wouldn’t go into any sort of leadership or consultant path now. I knew life would be a struggle for her.

When I look at old pictures I can see how my once open and bright eyes became distant, pushing the smiles. My husband and I dealt differently. Roger dealt by starting a second job. He was asleep by the time I got the girls to bed and was up and out before the house woke up. He was still taking classes, he stayed at school late. I dealt with the therapies, specialists and the day-to- day juggling act.

Two weeks after the diagnosis, while he was driving home during a snowstorm from an administration program he had started that fall, Roger answered my phone call. While telling me he was almost home, he flipped his car in a ditch. The last thing I heard was, “Oh no, hold on a sec.” then the phone went dead and I was standing on the stairs, with Kath in my arms and Alex nearby, screaming into the phone, begging him to answer me.

There are times I swear we can feel our brains shatter. Mine had done a good job trying to hold it all together, but it chugged to a halt that night and I felt a shift. Yet another one. This was one of self-preservation.

Roger needed 6 staples to his head. He refused to quit the second job, despite the anxiety I was in every single morning he left; despite how it was twisting our relationship; despite how it made me the one who shouldered all the decisions about Kath’s care, as well as Alex’s; however, that job is why we have been able to hang onto our home despite great financial challenges. But I felt more alone. I know he did too. We moved in parallel worlds.

He worked. I read lots of books, blogs, articles and I read… Kath.

Kath struggled with transitions so everything revolved around learning how to best teach her, how to make it so she could learn. The year before I returned full-time to teaching she had 13 therapies a week. I kept the therapies at home instead of at a school because that seemed to be best and the calmest place to center her.

I learned that she couldn’t see peripherally so I made sure I positioned her when holding her or standing near her that I blocked her so people couldn’t startle her when they seemed to come out of no where. I learned to warn her verbally about people coming up to her.

I learned that too much stimulation made it so she couldn’t figure out what to focus on; we stopped going to busy places, like Chuckie Cheese or the mall. We left events early if she seemed to get overwhelmed. Poor Alex had to leave too.

I learned how Kath’s balance could or would not compensate for other children, for different and uneven surfaces and for various lightening. My hands were always close enough to catch her or to at least make sure she wouldn’t break when she did.

I learned that she watched face expressions carefully and if she thought you were upset with her she would try to make you laugh. She was my Muppet’s Fozzie Bear. But she would take it to the point that one of her first teachers at a special education school thought she was misbehaving. This teacher then wouldn’t give Kath the positive smiles she sought, so Kath started to fear and hate school. Until she met her public school special education teacher, Mrs. Brown, that is.

I learned that she had swallowing issues that made nursing difficult, then later chewing and swallowing solid food. She pocketed food like a chipmunk and didn't know how to get it out of her mouth. We worked on teaching her and reminding her to swallow.

I learned that if she was not hydrated she would be challenging, if she ate too much sugar she would lose her mind, if she didn’t have enough protein she couldn’t pull herself back from the edge.

I learned that she hates having her arms immobile, held against me when nursing, even now she needs her arms out of the night blankets, she doesn't like to feel trapped.

I learned she didn’t lift her arms for me, or hug me, because she couldn’t.

I learned that other people have no patience for little kids, but they fear how to handle a child who has ‘issues.’

I learned that friends cannot always deal with difficulties and they move away from being with you because you are too heavy. Everything in your life is about what you are dealing with. And it should be because you are the one who has to give subtitles of Life to your little one. I also learned that sometimes they feel guilty about it so they make you hurt on their way out.

I learned that it is lonely being different from mainstream.

I learned that just as I have to teach Kath to be careful of others, I too can’t be too careful. I still share too much in my effort to understand my world, in my effort to make sure no one else ever feels as I did, in my attempts to make people understand her and me.

I learned I have to teach her where her weak spots are so I can also show her where her strengths are.

I learned I have to teach myself the same thing.

I learned that this wasn’t my fault. We had her blood tested and everything came back normal. We didn’t have my blood tested. So there is always the, “it could have been me” but I have also been told that it could have been the environment (whatever that means) and I have been told “sometimes these things happen.” But the guilt is there. Always, anyway.

The oxygen turned off while she was in my body. She had a massive stroke. The oxygen came back on. Unborn babies can have strokes, I never knew that. Another lesson.

When she was real small and I had started to try to explain her stroke to her she said, "I remember when I was in you. You told me to stay with you. And I did."

I never was on this shift, this journey, by myself after all. She is right there. And regardless of my guilt she loves me.

Maybe when she gets older and understands it better she might blame me for her shifts and struggles. But for this year I am getting better at forgiving myself. Or maybe I am just getting better at being okay with losing control of the plans I make. Maybe I am getting better with being okay with being alone sometimes and seeking out those who can handle me when I need them.

Maybe it is about the resiliency of reaching out, staying and proceeding calmly.

I’m still learning, and my girl teaches me every day. And she gives some of the best hugs.