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.

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.