The Best Part of You

For the past few weeks I've been working on a poem that I believe encapsulates my feelings of thankfulness to all of the amazing people who make my world go 'round. Since I don't drive because of my seizures, I find myself constantly at other people's mercy, and I won't lie: it is infuriating. It is a terrible feeling and one I try to avoid as often as I can.

But I've lived this way now for many years, and I've tried hard to find the good in my situation-- to find the helpers, as Mr. Rogers would say. I have been blessed with such great people, but I don't think I'd know them the way I do if I didn't really need to. If I didn't really need them.

So, here is the poem. You know who you are, and you are wonderful. Happy Thanksgiving.

The Best Part of You

I know that
daffodil in the snow part
of you, that
shiny penny on the path part
of you

You stop everything to
pick up my kids
to take me to work
to the doctor
the store
the pool
the library

You drive me home
yet again
you pile muddy baseball boys in your
extra seats—smells like death
but you laugh,
a soft laugh of knowing
of caring
of giving

You teach my class for me you hold me
while I shake you carry me when I can’t
walk myself you let me cry

You change plans to drive me
when it rains or snows
you get blood in your car so my
son can get stitches

I see the light in you I see
the warm, glowing goodness
others never get to know
because they don’t need you
like I do

I’m thankful that

I get to see the best part of you

Fall time shenanigans 

It's the Silver Line!

For years we've heard that the metro will for sure be coming to Reston on its way from DC out to Dulles Airport. We had that in mind when we bought our condo six years ago near one of the two planned Reston stops. Many political and economical and financial discussions and plan-changes have been going on for so many years it has been hard to keep track (pun intended) of the latest metro news. Well, last Saturday it finally happened! The grand opening of the Silver Line! For those of you who drive, it might be intrusive and annoying to have a metro stop by you, and all the businesses and people that come with it. But for your friendly, non-driving, epileptic momma, this is awesome!

Before, I could walk five minutes to a transit station to catch a bus to transfer to the metro to catch a train to get downtown. BUT. Now I can either walk 15 minutes to the station, catch a train and be downtown in 25 minutes or less, or, to make it even faster, I can catch a bus outside my door that goes directly to the station, be there in two minutes, catch a train, and be downtown even faster. It is so much easier, and direct, and exciting!

Today I took the boys on our first Silver Line adventure. Though the parking garage is still incomplete, the station is open and sparkly new. Maybe I got a few goosebumps walking over the toll road.

There doesn't have to be a silver lining, anymore...there's a silver line. (Badda-bing. Sorry, I just had to work it in somehow.)

Look out, Silver Line, weirdos boarding.

We got on the front car and watched all the new route and new stops.

The Next Ones

I averaged about two seizures each year over the past ten years. But in less than a year now I've had five seizures. Yesterday I had the fifth one-- the second one since I had Teddy. It was absolutely and completely my own fault this time. I had forgotten to take my medicine. The time before yesterday was in August, and that was when my neurologist had me cut back on my dosage too quickly and I had one in our street with all three boys. Fortunately for that one Brian was just upstairs in our house and Calvin sprinted up to get him while Clark stayed with Teddy. Awesome kids.

Yesterday my dear friend Missy stayed with me after she was going to drop us all off because I had felt a sometimes-seizure-indicating tremor while we were out. So when I had the seizure I was not only safe at home, I was safe at home with Missy to take care of the FIVE children that were there. It inconveniently happened on a rare day that I was watching little Alex, who I used to watch all the time. I fell into a wall and got a black eye and bit my tongue all up.

I hate my situation so much. I have sole responsibility for the lives of my children and sometimes others' children too, and yet I can't always guarantee that I will be capable-- even conscious-- throughout my responsibility. I find myself wondering if having children was a smart decision. Every day they are in jeopardy because of my seizures. And then I get bummed out about it and sad and wonder if my seizures will get worse and worse or stay the same or get better. I'm sad that my seizures scare my kids and husband. And then my medication makes me spacey and I forget what I was worrying about. I know it could be much, much worse.

It's an odd and helpless feeling to have your own body fighting against you in this way-- I'm sure in any way.

One thing is for certain; I am blessed to have so many people who are willing to drop everything and help me when I need it.

My eye from yesterday

My knees from the street in August

Hearts and Seizures and Kidneys and Eyes

We have some medical updates and news as of late.

Heart: Awhile ago we learned that there is an elevated risk of cardiac problems for babies whose moms are on seizure medicine and who have seizures. So the doctors do a detailed heart scan at 22 weeks where they look at all the parts of the heart and the blood flow and use a lot of words whose meanings I don't know.

Last week they did the scan of the baby's heart and everything checked out normal. It took the technician 30 minutes to complete the scan because Peapod wouldn't hold still. That kid is constantly moving. He must be taking notes from his brothers or something because he was flipping around in there like a gymnast and driving the technician crazy. She suggested we name him Speedy, which will definitely be worth considering, based on the boys other name suggestions. Which have been, among others:

Zamboni
Lasagna
Slapshot
Gorilla
Kevin Bacon
Fred
Balcony
Alcohol

So all is good on the pregnancy front, aside from the fact that I'm ready to hold this child in my arms, as I so eloquently wrote about here.

Seizures: I haven't had any since my last one about a month ago that scared us. I wrote about it here. A huge blessing has been that my wonderful mother-in-law has been coming over four mornings a week to just be here for two hours before she goes to work. I hadn't thought of her as a possibility because she works full time, but she works across the street from us and can come over and be here for roughly the first two hours I'm awake. This is huge! The boys love having her here and she has been able to get all kinds of cross-stitching done on her grandchildren stocking projects.

When the baby comes we will try to have something else in place for the other one day a week when she can't make it, but what a huge relief it is to have her come over! It gives us, especially Brian, peace of mind to know that if his pregnant wife has a seizure, she isn't alone in the house with 3 year-olds.

Kidney: On another medical issue that came up a couple weeks ago is that we found Clark has an abnormality with one of his ureters (tubes in between kidneys and bladder) which seems to be causing him occasional pain. The urologist doesn't think his back pain (which he complains about when he needs to go to the bathroom, but not every time) is related to the abnormality so he sent us back to the pediatrician to check out everything else again. Nothing else seems wrong so we are now documenting every time he complains of pain. Apparently the abnormality with the ureter doesn't normally cause any pain unless there is a much more serious problem, which results in all sorts of horrible symptoms such as projectile vomiting. Anyway, we will most likely be taking Clark in for some pretty invasive tests (think catheters) soon to find out if there's something else wrong.

Eye: As far as Cal's eye, everything seems to be fine since his alignment surgery in the fall.  He still patched four hours every day. He will actually see his eye doctor for a vision test this Friday and we think he may need a new prescription-- which is hopefully because his vision is still getting stronger!

So, there's the medical news of the household in case any of you were wondering...

Just for fun- Cal and the green wig

The Way It Is

Last Sunday I had another seizure. It’s the second one I’ve had while pregnant this time. I fell straight down on my abdomen from a standing position. I fell partially on Calvin, and my coffee splattered all over the carpet. Fortunately, Brian was right there since it was Sunday. He called his mom to watch the boys while we went to the emergency room to have the baby checked out.

I couldn’t believe it. I’ve averaged one seizure per year for the past four years or so, and I just had one three months ago. I honestly didn’t think I’d have another one until next fall. Silly to think I could predict my own unpredictable neurological misfires.

I discovered, on returning back home from the hospital (Peapod was fine- moving all over like crazy on the sonogram), that I had forgotten my medicine the night before. That was a huge relief. I thought I’d remembered it. I can’t tell you how many times in my seizure-medicine-taking life I’ve forgotten my meds and been fine. But the only two times I’ve forgotten them while being pregnant this time, I’ve had a seizure within 10 hours of missing the dose.

Now our minds are spinning—I think especially Brian’s because he watched the seizure. What will we do with a newborn? The boys will not be able to pry me off a baby if I fall on it. They can’t turn off a pan with scorching pancakes on the stove or pick up a baby out of a bath. They can call for help on their phone, but that’s about it at this point. Fortunately we've been blessed as a family to get through this far with no horrible accident surrounding my seizures. But if something did happen we could never forgive ourselves. We feel that we need to make better arrangements. And now we are trying to figure out what in the world to do.

My seizures always have occurred within the first hour and a half to two hours of waking up. Basically I just need an alive, awake adult in my house every weekday morning for two hours. Let me tell you how this makes me feel: utterly useless. I hate that I need it, but I’m trying to swallow my pride and do what I need to do to take care of my family. There are other options we’re also looking into, but the least life-changing one would be to simply have someone come babysit me- a 32 year-old adult- every weekday morning; keep me from hurting my own children, should I have a seizure. It's grim and it makes me sad. But that's the way it is. I know it could be much worse.    

Any and all other ideas for how to face this are certainly welcome. 

Dawnee Fell Over

It had been a little over a year since my last seizure. I guess I was about due. I forgot to take my meds last Sunday night but remembered first thing Monday morning and took them. But it was too late and the meds didn't help. I had all three kids at home and didn't feel a tremor or anything coming on. Just nothing.

It was the usual super-confusion afterward, as I tried to desperately remember what day it was, what was happening, etc. I remember waking up on the floor and seeing Calvin hiding behind a box. He was patched and didn't have his glasses on-- which means that he couldn't see much of anything. I wonder in what order everything happened, but I'll never know. Did he willingly take his glasses off so he didn't have to watch me? Who knows. I asked the boys if I had a seizure, and they kept saying no, that everything was fine. I quickly got on Gtalk and told Brian and I emailed Alex's dad right away too. I don't have any memory of doing either of those things, but thanks to technology, it's all here.

The transcript to Brian was:

me: yey, i had seix;ure. Ca yuoiu copme home?

Brian: Okay. Will do.

me: THanks.

Brian: ARe you okay?

me: yeah i just feel very uconfused.

The email I wrote to Alex's dad was titled "siexuree." And its contents were:

"Is had a seizure this morning. Plaease come and get Alex wen you can. I'm so sorry. Everyne is fine."

Even though it's a little creepy, it's pretty comforting to know that I'm aware of what happens, even though I have no memory of being aware. And apparently spelling goes out the window when my brain freaks out. Understandable.

So, anyway, I seem to have pulled myself up, noticed a smoking pan on the stove and proceeded to finish cooking French toast for the kids, set them up to the table and served breakfast. Brian came home and I slept most of the day. The seizure headaches and post seizure confusion are intense. It was great to have Brian so close that he could be here so quickly.

Last year the boys talked about my seizure. But this year they will not, and I find it curious. Last year afterward they kept saying, "Mommy, you had a seizure," but this year they seem to have either genuinely not witnessed it (which just seems impossible) or they are choosing to deny it.

But, Alex is not in denial. In fact, she has the most insight of anyone into what happened. She's been telling her parents that "Dawnee fell over," "Dawnee knocked over a chair," "Dawnee was shaking." She even did the motions.

I worry about the boys and how they will handle my seizures. I can't imagine what it would be like to witness my mom having a seizure. I like to think it will make them stronger. Maybe it will make them creative.



I thought what Cal drew tonight fit well with the topic.

Epilepsy Awareness Month

November is International Epilepsy Awarness Month, and since my life is affected because of having epilepsy, I thought I'd spend some time this month reading other people's stories and other articles I find, and sharing some of them here. On the Epilepsy Foundation of America's Facebook page I found links to blogs with stories that just make my heart ache. I can't imagine how difficult it would be to have a child who has seizures at all, let alone one who has multiple seizures each day for years and years. But there are so many cases like this.

While reading them, one blog stood out to me. It's called Calvin's Story. Of course it stood out to me initially because I have a son named Calvin who also wears glasses. This Calvin's case is so extreme, and his mom is so honest and strong in her writing and so active in trying to rally support and raise awareness to someday find a cure for this mysterious condition called epilepsy. She has a page called Calvin's Cure with a link for epilepsy research donations to be made in Calvin's name.

Click on the link above to read some of her blog, and get a sense of her story.

A couple other things I've come across this week and shared on Facebook are this article about the keto diet being effective, especially in children, and this short interview with the University of Minnesota's coach who had a seizure during a game in front of thousands.

I am thankful that I am able to live such a normal life, even with epilepsy. I pray that someday soon there will be a breakthrough in research that can help these people whose lives are so painful and limited.

A New Friend

When I started this blog it was little more than an online journal in which I could share stories of the boys with people I didn’t see often. As I started writing more and reading more about blogs, I had an idea while trying to find a brand for my blog— something to make it stand out and give it a more single purpose. I could help two very specific types of people: stay-at-home moms or dads with epilepsy, and people who have families in small spaces.

While I still do plenty of simply telling silly stories, I’m also glad to know that I’ve helped people. A couple months ago a woman called me after having found my blog in an online search for stay-at-home moms with epilepsy. She recently started having more and more seizures and she and her husband had come to the realization, just like Brian and I eventually did— that it isn’t safe for her to drive, even if she legally is cleared by the DMV. They, however, don’t live in a walkable location, and amazingly, they live only about an hour from us. So they’re in the process of relocating to a place where the quality of her life and the lives of her daughters will not be diminished by her inability to drive.

We met this Saturday and Brian and I tried to sell her and her husband on Reston. We went to a Reston playground, ate at a Reston restaurant, and treated them to a tour of a fine Reston condo, tastefully adapted for a family of four (ha!). I was happy to know that they had read about some of my suggestions and even bought the same phone that we bought, in order to prepare their daughters for a seizure emergency.

The whole experience has been so cool. I’ve only met three other people with epilepsy, and never another stay-at-home mom. Writing about my experiences and tossing my scribblings out to whomever may stumble upon them online, has helped at least one person in my shoes, and that’s a cool feeling. I'm so thankful that she contacted me. Sometimes I’m not sure anyone is listening, but this kind of response is rewarding. I hope there are even more people I've helped.

And I also got a new friend. A new Reston friend…?

 

Just Be Enough

It has been great to meet so many local Virginia and DC bloggers over the past few months. I've met many of them online and some of them I've actually met face to face. Today I have a guest post on Just Be Enough, thanks to having virtually met Elena, the voice and heart behind Just. Be. Enough. Read it here.

A Amerchancy

Woooo Woooo!

A few weeks ago we went to Friend Philip’s birthday party at a fire station. The firefighters themselves decorated the room with firemen birthday decorations and set up the tables, complete with firemen-themed goodie bags and plastic firefighter helmets for everyone. Impressive! The firefighters gave the guests a tour of the fire station but beforehand they asked if anyone knew what an emergency was. I don’t think I’d ever mentioned the word to the boys, but we’ve talked a lot about mommy having a seizure and what they should do. 

The presentation at the fire station made me think even more that we need to have a specific and simple plan in place for the boys. Up until recently there wasn’t much we could have them do if I had a seizure. Here’s what happened last time I had a seizure with all three kids in the house with me.

I wonder if Clark enjoyed the red fire engine cake?

Brian and I had been trying to figure out how we could start training them to call for help. Chances are, the next situation will not go as ideally and smoothly as that time did. My cell phone is hard for them to use, and we’ve never had a land line at our house. We found out it was another $25 a month to add a land line and so Brian did a little research and we ended up buying an Ooma, which is an internet-based phone line. He found a phone accessory from Sharper Image that is designed for elderly people. It’s got gigantic buttons with places on each button for a picture. So we got that hooked up a few days ago and mounted it on the wall in our living room at the boys’ height. 

We’ve been having the boys make some practice calls over the past few days, and collecting pictures for the buttons. They like it, and it has been so funny to see them mimic our phone call behaviors as they lean against the wall and chat with Grandma. So far they have not picked it up without asking, but have waiting until we've told them they could practice to use it. A few times they've flippantly pushed faces without us looking, but during a practice session, like calling Brian when he was at work, but other than that, no misplaced calls. Now we're all set for a amerchancy, as the boys call it.

If you have toddlers, this might be something to think about doing. Specifically if there is a slightly elevated risk of an emergency in your house, like there is in ours.

The perfect spot

We are not programming the taxi, hospital, or fire numbers, just don't have the other pictures.

Epilepsy

I was diagnosed with adult-onset epilepsy when I was 23. I might have had my first seizure when I totaled my car at age 21, but no one saw the wreck and I had so many other injuries that no one thought to give me an EEG to see if I had seizures. The other possibility is that I developed seizures after the accident because of my skull fracture. We’ll never know.

At 23 I had another seizure behind the wheel and this time someone saw that I was having a seizure. It was then that I had gamut of tests and later in the year they told me it was epilepsy. Read the full story here and here (and various musings here and here). Since then I’ve taken seizure medication and have had seizures all over the place, but I usually only average around two a year. Epilepsy is loosely defined as episodic abnormal electrical activity in the brain that happens numerous times and can often be controlled but not cured by medication. No one knows why these electrical misfires happen, though there are things that trigger them for some people. It’s very much still a medical mystery.

Compared to many people, I have it so easy. After completing the Walk for Epilepsy last year I met more people who have seizures much more frequently than I do and who cannot find a medication that does not give them horrible side effects. At the walk, people with epilepsy wore purple shirts. The saddest thing to me was seeing strollers draped with purple shirts. I can’t imagine being the parent of a little child who has seizures as often as several every hour, which is true for a lot of childhood epilepsy patients. While it usually doesn’t have the social stigma that it used to, epilepsy still has social and of course medical challenges that people face.

I certainly don’t think of myself as a victim and I don’t want others to either. In fact, I think having epilepsy has made me a better and stronger person. It has also made me aware of other much more debilitating and devastating cases that make me want to do a little something to help. (3 million people in the US have seizure disorders) Thank you so much to those who generously donated money last year and those who have already this year. I will be thinking of you as I walk! If you haven't yet, please consider donating in my name or walking with the boys and me at the end of March. In a nutshell, here’s what your donation would go toward:

Helping support innovative research toward treatment options such as intravenous anti-epilepsy medication, specifically for infants with seizures

Helping support advocacy efforts that make sure people with epilepsy are not discriminated against, especially through health care coverage (My medication without insurance costs $300 a month)

Helping provide programs to educate first responders to identify seizures from behaviors that could be a result of drugs or alcohol, and to know how to help

Click here to donate.

Wheat and Stomp Rocket-ing

I've decided to not eat wheat for two weeks. I'm part of the way into the third day, and it’s actually not as hard as it seemed the first day. Why am I doing it? I'm not really sure exactly, and there's not one reason. I've been reading things like this and this and this and about wheat as a common allergen and something that slows down your metabolism. Cutting out wheat and carbs in general is what people with extreme cases of epilepsy do to try to manage their seizures through diet. When your body is basically starved, it runs on ketones, and for some reason no one has seizures while running on ketones. That diet, however, is to be done under close observation by doctors and is close to starving yourself, which presents its own set of complications.

As far as anecdotal evidence, my mom and grandfather have always had bad allergies, frequent sinus infections, and troublesome noses in general, all their lives. They both recently did a battery of allergy testing that showed they are both allergic to wheat—and pretty severely. Going off wheat greatly improved the quality of life for both of them. Some of my brothers and sisters in-laws have been cutting out carbs and have had some big success with weight loss and overall health improvements.The other day I was talking to someone who controls her migraines by cutting out wheat and some other main categories of food. So, with science and success stories, I decided to give it a go.

It’s not that I’ve felt bad and was looking for help…it’s just that I’ve been feeling…heavy inside from eating the bread that I eat, and of course since most processed foods have wheat in them, I’m also cutting out those, which will do nothing but good things for my health. The last two days I’ve felt great, and I’m very excited about it! Let’s face it, I can stand to lose a little weight as well, and hopefully changing my eating habits will help with that. The last two days I’ve also been able to run outside, which has been marvelous. It’s been around 70 degrees! The boys and I spent some quality time in the sunshine today, using their stomp rocket. I leave with the stomp rocket photo story. Happy Wednesday! 

Getting ready to launch

Cal's turn

Your turn, Mommy!

Mommy stomps with too much gusto.

Watch me, Mom!

Clark brought his pet dog to watch the launches.

Watch, little doggy!

Cal's turn to take pictures

Clark's turn...

PS. Anyone else want to give up wheat with me?! Anyone else living without wheat? Anyone have good no-wheat recipes?

National Walk For Epilepsy

I signed up for the National Walk for Epilepsy again this year. Last year I walked with my brother and ended up with a lot more sponsors than I anticipated, which was cool. It was weird to see so many people in purple shirts (people with epilepsy wore purple at the walk last year) walking around, when I've only ever met a couple other people with epilepsy. So many people have it way worse than my measly average of one or two seizures a year, that I'd like to do a little bit to help fund further research and support for such a baffling condition.

As it turns out, the little bit I can do to help is to walk in a big circle on March 31st. So, if you're around and you want to walk in a two-mile circle around the National Mall with me, join my team or donate online right here.  I think I'll take the boys out on the walk with me this year!

Aaron and me at last year's walk

That Accident Ten Years Ago

Ten years ago this month I was in a car accident that should have killed me. I don't want to get all Nietzsche about it, but the experience and its repercussions have shaped me in a way that nothing else has, and made me stronger. On that January morning, my parents got the call from the hospital that must have really sucked. They packed, made arrangements for my other siblings, and drove without knowing much about my condition, six hours to the hospital. I was still in surgery when they arrived. Seven broken bones, two bone grafts, a couple years of physical therapy, a couple hardware removal surgeries, the diagnosis of epilepsy, twenty or so seizures, some in the middle of streets and at bus stops, and here I am. Still alive. Still grateful.

I was weaseling around in my old cards and photos the other day, looking for pictures the boys could cut up for a craft we were doing, when I found the stash of cards I kept from ten years ago. I decided as I was reading through them that I need to write something about all those nice people who were so wonderful during that time in my life. I know I ended up throwing some of the stuff out-- certainly the majority of the large stuffed animals had to eventually find new loving homes, and the cards from eighty-something students I had just finished student teaching, while sweet, I found no reason to keep. Space is all-important here in our cozy little hive. But most of the notes I kept-- I'm a sucker for the written word, after all. I found myself tearing up as I read through them, standing there in my slippers, holding the notes with my dry-from-too-much-washing mom-hands, stupid Jimmy Buffet singing in the background as the boys played their guitars with that cringe-y, out of tune twang. I tried not to let the boys see that I was crying, which wasn’t hard because they quickly switched from a cheeseburger paradise to fighting over drumsticks and space shuttles, as I allowed myself to remember that time.

While I make no claims whatsoever to having It All figured out in life, I think it will be good for me to write a reflection on what I’ve learned from my accident and my ten years of unusual challenges due to having epilepsy. Hopefully it will serve as some semblance of a tribute to so many of you who were selflessly thoughtful and endlessly kind to me specifically during that rough first year of recovery. I know my inner teacher is showing with this, but here are the main things I’ve learned:

Control: I don’t have it and that’s okay. I never thought I was a control-y person before, but my accident and subsequent surgeries and seizures took away much of the control I had over my life, and it has not been easy to part with. When all is said and done, what I have control over is simply my attitude when dealing with my lack of control. I spent months not even being able to shower or get dressed by myself and I couldn’t stand on two feet and walk for six months after my accident. I watched as what should have been the last semester of my college experience passed without me. I watched a replacement roommate take over my bed in the house I lived in with my best friends. I watched those friends graduate. I watched the club softball team I’d helped start go on to play their first season of NCAA Division 2 softball without me. All this happened while I lay on my hospital bed at my parents’ house a couple hundred miles away, the muscles in my legs atrophying away. All I could do about it was get angry, which I definitely did from time to time, or do my best to let it go. It was a struggle then, and it still can be now. I have to rely on everyone around me because driving with my epilepsy doesn’t work. Two times since being diagnosed I’ve gotten my driver’s license back because my doctor and I have thought we’d figured out the formula for my seizures—how much medicine I need, why I have them, how to feel them coming on, but both times we’ve been wrong and the car keys have been taken from me after a year and a half one time, and after just a few months the next time. I have to depend on the buses coming somewhere near on-time and hope that people won’t get sick of me asking them for rides. I used to prize my independence so much that losing control of much of it has taken me ten years to do, and I still struggle with it.

Perspective: A lot of crap doesn’t matter. This goes hand-in-hand with the control thing. So much isn’t worth getting worked up over, all things considered. After I started walking again, everything else seemed insignificant. The car broke down? I failed a quiz? I spilled ketchup on my white shirt? I locked myself out? So what? I can walk. I can move around and do things by myself. It sounds cheesy, but I thought that way a lot the first few months after I started walking again. I swore to myself I would always remember how lucky I am to simply be walking. This ten year crashaversary is a good reminder.

Humor: It makes the world a better place. I like to think I knew this before my accident, but my experience reinforced the fact. Learning to see the funny in situations also helps with the perspective of it all. How else am I supposed to deal with being carried down the aisle in a two giant casts as a bridesmaid and a month later crutching down the aisle as yet another bridesmaid? And depending on my roommates to walk to the back of the grocery store to buy my milk and laundry soap for me because my weak legs couldn’t handle so much walking? The accident and my epilepsy journey have refined my stellar, completely awesome sense of humor that you wish you had.

People: Nice people make life richer. I have been blessed with so many amazing people in my life that it’s almost ridiculous, many of whom shined that first year following the accident. First and foremost were my parents and my little brother and sister, who were still at home. My sister and mom did most of the difficult work—showering me and dressing me, rubbing my feet to cheer me up, holding me when I cried in pain after the surgeries and therapy and general frustration, feeding me, entertaining me, taking me to physical therapy three days a week. And other people came out of the woodwork to help me. People I had fallen out of touch with for years sent cards and people I wasn’t sure even knew I existed came to visit me in the hospital. They prayed for me. The English department, my fellow English Ed majors, and my friends helped me deal with being out of school and rejoiced in my small steps of recovery, usually through email. One professor aided in getting me to meet and talk to the Holocaust survivor Elie Wiesel, about whom I was doing my senior project. What did we talk about? Mostly the fact that I had two casts on my legs and was pushing a walker at age 21, because he was in a similar situation after being hit by a car years before. Friends took me bowling in my wheelchair. Friends of my parents brought me a little television for my room and drove me places. My accident helped heal one friendship in my past that I am so thankful to have back.

As I look back over all the cards people sent and remember the nice things people did for me, I am astounded and I aspire to be someone as nice as those family and friends who did and still do so much for me. After I was diagnosed with a seizure disorder I narrowed down my search for jobs to places with good public transportation and that is how I ended up in the DC area. Here I met and married Brian, who drives me everywhere and does all our shopping, as well as provides love, care, and support for our growing family. I have twin boys, a condo in a perfect place for walking, and more amazing friends. I honestly don’t know what more I could ask for, except maybe a smidge more space. I even got those Russian nesting doll plates from World Market that I was drooling over because another amazing friend read my blog entry about shopping!

And that is my ten years ago story and reflection on all it has meant to me—on how it has shaped my character and my life. I hope most people who touched my life in those first months have a chance to read this and know that I have not forgotten their kindness.  

The day after the accident...for some reason I can't rotate this.

Visiting part of my softball team

Watching my best friends graduate

Being carried down the aisle as a bridesmaid

Wild Rocky Red: Attack of the Wooden Horse

Last week we had another medical adventure at our house. (My seizure being the first one, two weeks ago.) As Clark was rocking out on Rocky Red, the faithful, much-loved rocking horse, and listening to Jimmy Buffet, as they both do daily, he pulled back too hard and fell over backward into the side of the recliner. Rocky Red came down hard on him, somehow right below his left eye and the cut was immediately bleeding all over the place. Cal was upset, yelling, “Clarky, Clarky, Mommy. Clarky!” and sticking his face into Clark's face to look at his cut. Now, this is urgent, brotherly sympathy is something I have seen a few times, mostly in Calvin, that just makes me want to cry, it is so sweet. I hope they always feel that way about each other. I spent more words assuring Cal that Clark would be okay than I did comforting Clark—I mostly just held him. 

I grabbed what was around—a little white sock—and put pressure on the cut and wiped up the blood, wondering how in the world I could get Clark to the emergency room if that’s what he needed. I had Baby Alex that day too, which meant the double stroller would not be enough to transport us all. Meanwhile Cal kept saying to Clark, “Clarky, wait here, I will get strawberry medicine. Be right back,” and going into the bathroom, calling me to help him, melting my heart all over again with his concern. I called my friend Aimee who happened to be already out and in line at a grocery store nearby. She rushed over with her little boy and watched Alex and Cal while I pushed Clark in the stroller to the ER. Sidenote on the awesomeness of where we live: How many people do you know who could walk to the ER faster than it takes to drive to the ER and park? Maybe only me. And also, how many people do you know who have been to the ER as many times as me? That's what I thought. Since I can’t drive, we are so blessed to live here. The day before it had poured rain, but that day it was sunny so the walk was simple. Clark was incredibly brave, in part due to the book he loves, Maisy Goes to the Hospital, but also because he visited the ER in June and got stitches in his chin. He remembered that they had turned baseball on the TV for him, and you know how much the kid loves baseball.

Clark the next day, sporting not only his cut, but one of the new surprised faces he likes to practice. Notice Rocky Red sulking dejectedly in the background.

We got in and saw a doctor right away. Clark hardly cried and all the nurses were smitten by him and all his talking. He called a lot of things cool and pretty and cute and the nurses nice. You can tell who he hears talk a lot, though I’m not sure I would have chosen those words for the sterile insides of the ER. Fortunately he didn’t need stitches, just some skin glue. A couple sizable superhero stickers later, and we were out the door and on the way home. It is amazing to have Aimee so close and so helpful and super with the kids. All things considered, this was another case of best case scenario coming from a scary situation…and both in the last two weeks. Hopefully this week will end without any disasters. 

Mommy, You Had a Seizure.

I had a seizure last week. It had been a little over a year since my last one and this was my third one since becoming a mother. The first one was when I was in the hospital and the boys were two days old  and the other one I was right next to Cal in his car seat as Brian was driving. This was the first one where any kind of  verbal language was possible for the boys.

It always surprises me how confused I get after I have one. I must have been standing up at my computer when I had it because I woke up under our kitchen table, feeling very confused about how the three kids could have possibly gotten themselves dressed. They were walking around calmly and playing quietly. I first of all called my dad, I guess because I was thought he was still visiting. I asked where he was, and though it was 6am in Idaho when he answered, he and my mom quickly figured out what must have happened and called Brian at work, who picked up and called his mom who works across the street from our house and is our normal emergency contact, but he couldn’t get in touch with her. So he raced home from work and I somehow had the presence of mind to email the mother of the little girl I babysit and she had her husband come pick up their daughter. And somehow in those next twenty minutes or so, when I was maybe lucid-ish, maybe not, the kids didn’t fall in a toilet or electrocute themselves or even fight each other. 

When Brian got home I went to sleep and slept most of the rest of the day, waking up every now and then to a splitting headache that I tried to control with Tylenol. Seizure headaches last all day for me. It hasn’t quite been a week since the seizure, but I can’t remember much of that day. My memory on seizure days is always like that. I pretty much lose the whole day. I found out that when I talked to my parents I kept asking, “What do you mean?” which pretty much sums up what I remember thinking all day that day. My parents tried to keep a boy on the phone to talk to while we waited for Brian to get home, but neither of them was interested and so we ended up being cut off.

Brian had a chance to talk to the boys about what happened while I slept and we’ve all talked about it since then. “You had a seizure, Mommy,” they’ve been telling me. “You fell down. You’re fine.” In my memory, I don’t remember the kids seeming scared at all, or even interested in me, but they told Brian that they saw me fall down and that they all three came over to me and cried, but I think they might be getting caught up in the dramatization of the scene as opposed to the actual scene.

This has all given me a lot to think about—beyond piecing together what must have happened based on where my bruises are. How much do I need to talk to the boys about seizures and what to do when I have one? I suppose the more they know the better, but I also don’t want to scare them. I’ve known that being a mom who can’t drive is my lot in life, but the fact remains that the reason I can’t drive is actually a reason that can be quite dangerous in many other ways as well—more dangerous than the inconvenience of not being able to drive. I want them to be ready and smart for when my brain freaks out next time. But mostly I want them to be safe. Hopefully the next time I have a seizure they will be able to pick up a phone and call for help. And hopefully they will call someone who is nearby, not in Idaho and asleep.

National Walk for Epilepsy

On March 27th I will walk in DC in the National Walk for Epilepsy. Since I've never participated in the walk before and I've only ever met a couple other people with epilepsy, I'm looking forward to meeting more people in my situation. If you want to read more about the walk, go to their website. If you'd like to help sponsor me, go to my participant page to donate.

Epileptic Ninja Recharging

I have epilepsy. This is something I know and deal with daily in the form of medication since I found out about it eight years ago, but I don’t think much about it from day to day. I’m more focused on things like keeping my kids alive and well and my house passably clean.

The other night I attended a writers’ group meeting where one of my short stories was being critiqued. The main character in the story has epilepsy and that’s the main conflict—she is afraid to leave her house for fear of having a seizure in public.

I know a couple of the writers in the group fairly well from working with them last year, and they know I have epilepsy, but the leader and the others didn’t know. As they discussed what they thought of the story and the main character, I told them I have epilepsy and gradually, as they observed that I wasn’t shy about talking about it, they asked more and more questions. What they got from me, were abbreviated tales of my first accident and not walking for 6 months, second accident, move across the country, various seizures in the middle of streets and at bus stops, etc.

As I was walking home from the bookstore after the meeting I thought of
you—friends and family who have been so helpful and supportive to me. It has gotten to the point where with the last few friends I’ve made (friends with toddlers my boys’ age) I’ve straight up told them (sort of pretending to joke) that being my friend comes with a price—there are always going to be complications since I can’t drive. Fortunately my new friends don’t seem to mind driving us to the zoo and having more playdates at my house than at theirs since it’s hard to get out to walk even a few blocks when it’s cold. I must exude awesomeness.

Without the help of you I would be quite stuck, both literally and emotionally. You have driven me all over and held my hands before and after surgeries, helped me relearn to walk, and those farther away have prayed and sent notes. Without a husband willing to do all the grocery shopping and to spend more money for less space to buy a home in a walker-friendly location with good public transportation, my life would be much more difficult. Here’s to you. I am blessed.

Later that night I got an email from a guy I know in the group. He told me I had a lot of courage to talk about my condition in front of the group like that, which got me thinking… I don’t consider it courage and that’s probably because of all the support I’ve had. I’m sure people have made fun of me, but I’ve never heard it, or rarely, and I participate in it sometimes.

Because I am (was) a teacher I’ve always had to be transparent about having epilepsy. To not do so would be dangerous. I tell my students on one of the first days of class, so they know what to do if I have a seizure. I have to tell administrators and teachers on my hall and hand them emergency contact numbers.

I can’t lie, I am dreading being a mom who can’t drive her kids to baseball practice or birthday parties. I hate the dependency I have on everyone. But you wonderful people in my life make it easier. I lead a slower-paced life amidst the rush around me, and that is probably worth something. It gives me more time to write and spend out of the car with the boys. Perhaps it aids in my creativity.

Anyway, the experience at the writers’ group provided the opportunity for introspection and counting my blessings. And I needed that. Thanks. I’m recharged.

I’m including pictures of our neighborhood that I get to walk around and our balcony in the spring because I long for spring to be here, but also to break up all this text.