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.