As I previously mentioned, my son started middle school this year and I’ve been worried about how he would be accepted in his new school, especially in this strange year where nothing is normal. What could I do to help ease the transition? The answer became clear one day when I received an email from the school recruiting kids to join the school’s cross country team. I knew what I had to do; I had to join my son’s middle school cross country team.

Now I can’t take credit for this idea. I don’t know if this email would have resonated with me or that I would have had the guts to act upon it had I not been inspired by another special needs mom I know. Her daughter is much like my son and she joined her middle school cross country team and used her legs and a jogging stroller to help her daughter participate as a member of the team. When I got the email from my son’s school looking for participants for the team, I asked if I could sign Owen up and run on his behalf. I was really worried what they might think or how they’d react. I was overjoyed when they said yes with enthusiasm and without hesitation. While I was really excited for the opportunity, I was also nervous. I couldn’t help thinking what in the hell have I gotten myself into?

I have no idea how middle school cross country works in non-pandemic years, but this year each grade had their own particular practice day to cut down on the number of kids congregating together and in-person practices were held to once a week. The kids were expected to do various other activities on their own to continue their training. During the season we had 3 “meets” where the kids competed against each other rather than with other schools. Because of scheduling conflicts, Owen and I got to compete against all three grades. I hate to say it, but I’m kind of a competitive girl and I was really worried how we’d do competing against kids much, much, much younger than myself. I’m both happy and ashamed to say that we never came in last place, not even close. I’m ashamed by this because some kids got beat my a 54-year-old pushing a 50lb kid in a stroller. I hope I didn’t permanently damage some poor kid’s self esteem.

What I learned during my time on the middle school cross country team is that middle schoolers are an interesting bunch, still childlike but with more adult-like bodies. After our first practice, I was painfully aware of the name of one of our team members because his friend must have called out his name a zillion times. Another kid bragged about how he’d gone without water all day and forgot his water bottle for practice. Apparently dehydration is cool. I also learned that the coaches have the patience of saints, and their job is much like herding cats. Getting a bunch of kids to pay attention while they gave instructions was no small feat. Then there was the new, pandemic world worry of reminding the kids to keep their distance from each other. I learned that if my son were like the other typically developing kids, he’d probably be a bit annoying at this stage of life.

Most of the kids didn’t interact with Owen and me. We got the stares from a few, but not much else. Maybe they just didn’t know quite what to make of us. A couple did interact with us though. One kid asked if Owen was “running” too, and simply said cool when I said yes. There was another kid who knew Owen from elementary school and she was kind enough to hang with us from time to time. One time she walked with us as we were cooling down after a run. During that short cool down period, she shared with us her hopes and dreams in life, such as she wanted to live alone for awhile when she is an adult, but with an animal. She also didn’t want kids. Her sister did though, so she’d be the cool aunt. She also shared how sometimes she was called mature and other times childish. Seems an appropriate way to sum up middle schoolers. I really enjoyed our conversation. It was interesting to hear how kids her age think as I don’t have the opportunity to have that conversation with Owen.

I ended the season proud of myself for giving Owen the opportunity to get out and be among his peers and doing something that made me feel a little uncomfortable. He loves people so much, and enjoys each and every moment he gets to interact with others. Although he can’t tell me so, I feel the isolation brought on by the pandemic has been hard on him. I was bummed, however, because I wasn’t sure if I’d accomplished my goal of the kids getting to know him better. Other than the encounters mentioned above, the kids didn’t interact with us much.

The season ended with a pizza party that Owen and I planned to attend. I was going to ask the coaches if I could take that opportunity to share with the kids why we chose to participate on the team and allow them the opportunity to ask any questions they might have. Unfortunately, Owen was ill that day and couldn’t attend so I didn’t get that opportunity. What I would have told them had I had the chance was the reason I chose to participate on the team with Owen was so that they would become familiar with him and perhaps say hi to him when they saw him at school. That’s all. I wanted to share with them that sometimes people are different than us, and rather than stare at them, ignore them, or fear them, say hi to them, or simply greet them with a smile. They may not be able to greet you in return, but know you probably made their day just by treating them like you would any other person you might encounter on any given day.

Like other families across the country, we are gearing up for another school year, and  not your average, ordinary school year.  To paraphrase Ron Burgundy in Anchorman – love that movie – this one’s kind of a big deal.

This year, we’re entering a new frontier.  This has nothing to do with the Corona virus, although I’m sure that will make life interesting too.  This is about entering a new school frontier…..MIDDLE SCHOOL – insert gasp here.

Ah, middle school.  That magical time when you’re not quite a little kid anymore, but not quite an adult either.  That glorious in-between time.  It’s a time of great change for kids.  Much more is expected of you and great changes are happening to you.  I remember it feeling like being pushed into the deep end of the swimming pool and having to figure out how to swim.  There’s switching classrooms, more than one teacher, remembering locker combinations, lugging books around, etc, etc.  It makes my palms sweat just thinking about it.

The start of this year, of this new chapter in Owen’s life, has me filled with apprehension.  In Owen’s world, nothing much changes from year to year.  While his body may grow and change, mentally, he’s still a little boy who likes playing with toys meant for infants and toddlers and cuddling with mom and dad.  Chronologically, he’s a 6th grader but mentally, not so much.  How is he going to fit into this new school environment?

I worry about how he will be viewed and treated by his classmates.  This worried me  last year too when he started a new school, going from a self-contained classroom where all the kids had special needs, to being immersed in a classroom of typically developing kids.  I was pleasantly surprised last year when the kids embraced him and grew to appreciate the kid who was so different from them.  But now, he’s entering a bigger arena with kids who won’t know him from last year.  How will they treat him?  How will his friends from last year treat him?  Will it be the same?  After all, the stakes are higher for them now.  There will be more pressure.  More will be expected of them.  They too are transitioning to a bigger school and will likely have fear and anxiety of their own, not to mention there’s this whole Corona virus thing adding an extra layer of complexity to the mix.

So, what’s the best we can hope for this year?  Nobody knows and only time will tell.  Luckily for me, I just have to deal with my own fear and anxiety.  Owen is not phased by new people and new places, thank goodness.  I know others with special kiddos are not as lucky as I am.

And so begins the 2020-2021 school year.  Here’s to Owen and his classmates, the newly minted middle schoolers.  May they thrive and prosper in their new environment.  May they make it through the entire school year without interruption.  And above all, may they remember to be kind to one another, especially to those who are different from them.

I fancy myself a bit of a children’s book author.  I’ve written and self-published one book called “When I’m Asleep, I can Fly,” have written another one which will be published in a few months, and have another idea in the hopper.  All of my books have a special needs spin.  Although writing is a passion of mine, I was not inspired to write actual books until my son came along.  I’m telling you all this not because I’m looking to sell more books, but because it was in researching my latest book that I had a wonderful realization – the future is bright. 

The book I’m currently writing is inspired by a little girl who is a fan of my first book.  It is written from the perspective of a child who becomes friends with a child who has special needs.  I actually had this idea about a year ago and wrote a good junk of the book then, but realized in revisiting this project that it needed a little fleshing out.  So, I recently turned to my son’s current fifth grade class for ideas.  I thought I might get a few random thoughts from a few of his classmates, but that was not the case.  I was truly touched and blown away by the response I received and by their profound insights; so much so, that I had to share.

To give you a little background, this was my son’s first year at this school.  We just moved to our current neighborhood last July.  My son had been at his previous school for seven years.  In that school system, the kids with special needs are in a contained classroom and not mainstreamed with the rest of the school.  I was comfortable with that arrangement and loved the staff who worked with him.  His current school, on the other hand, is inclusive.  While he would be pulled out of class for special instructions from time to time during the day, he would be part of a class of regular fifth graders.  To be honest, this terrified me.  I was really afraid of how the others kids might see him or treat him.  I am happy to report that our experience at his current school has been nothing short of amazing.  He has been embraced by the kids and staff alike in a way I could not have imagined even in my wildest dreams.

Getting back to the book, one morning I wrote a random note in my son’s communication notebook asking that the kids share with me thoughts they had about having a child like Owen in their classroom.  That evening I received a stack of papers back on which the kids shared their thoughts about Owen and what he meant to them and how he changed their perspective about those with special needs.  It’s taken me quite awhile to get through what they’ve written because I can only read a page or two before bursting into tears.  Here is what they shared.

They spoke of how Owen changed their perception of not only those with special needs, but those who are different from them in general.  To paraphrase, one child shared that they learned that even if you’re different, you can still be great and awesome.  Some shared being nervous about having him in their class, but how that nervousness went away once they got to know him.  One child shared that even though Owen can’t talk, you can tell he’s a good person by his smile and his eyes.  Another child shared that what he learned from Owen is that you can be your own person and not care what others think of you.  And, one girl stated, “He’s his own special star that shines bright.”

When I asked the kids to share their thoughts with me in early March, I had no idea how meaningful this would be, as two weeks later, school was shut down due to the Corona virus pandemic.  While initially the shut down was only planned for two weeks, it now appears likely the kids will not physically be going back to school during this school year.  It’s especially sad because this school only goes to fifth grade, and as a fifth grader, Owen is one and done at this school and will move on to middle school next year.  It would have been nice to say a proper good-bye to his classmates and to the staff at school, but unfortunately, it was not meant to be.  What I am thankful for, however, is that I have their precious thoughts and insights to keep for always.  I originally intended for them to help me complete a book.  What I got, however, is so much more.  Their thoughts give me hope for the future – a future where those with special needs will be looked at differently.  A world where they will be embraced for what they add to the world and how they enrich the lives of others.

Everyone deals with stressful situations differently and waiting through the surgery of a loved one is probably one of the most stressful situations anyone can deal with, especially when that someone is your 15 month old child.

Of course when we announced Owen was going to have brain surgery, many of our family members assumed we’d want them to wait with us, to be there to support us at one of the darkest times of our lives.  That, however, was the last thing either Owen’s dad or I wanted.  Ridiculous as it may sound, the thought of a bunch of people waiting with me stressed me out.  I would feel the need to talk to them, entertain them, and collectively wring our hands.  I knew that all I would really want to do on that day was to retreat within myself and find a mindless actively to distract me.  I don’t know if they liked it or not, but everyone respected our wishes.

During the six hours or so that Owen was in surgery (truth be told, I don’t remember anymore how long the surgery was, but it was at least that long) I sat on my laptop computer doing a variety of things.  I online shopped.  I know that sounds awful, but that’s what I did part of the time.  I didn’t buy anything, just looked at stuff and filled my cart with no intention of purchasing anything.  It was oddly soothing.  Owen’s dad, on the other hand, watched movies.

I also checked into our Caring Bridge page.  I had heard about this just before Owen’s surgery and it turned out to be a godsend.  It was a great way to keep everyone updated with what was going on without having to make a million phone calls.  It was also nice to read messages people left each time I posted an update.  It was a great way to have human contact without giving up my quiet solitude.

We got calls from the OR, from time to time, to keep us posted as to where they were in the process and to let us know how Owen was doing.  I don’t recall if we knew ahead of time they would be doing this, but I was so grateful when we got the first call and looked forward to each subsequent call we received.

After several hours (again, I don’t remember exactly how many), we got the call that the surgery was done and Owen was doing well.  Needless to say, it was a great relief.  Shortly after that call we met with the surgeon who talked with us further about the surgery and how it had gone.

We were also told that we would get to see Owen soon, as soon as they got him to his room in the PICU.  While I couldn’t wait to see him, I was also scared about what I would see.  How would he look?  He had just gone through brain surgery after all.  I had never had a similar experience, so I wasn’t at all sure what to expect.

Finally, the the time came when we could see our little boy.  Walking into the room, I was horrified to see him with his swollen head and giant “C” shaped incision.  They told us all about the surgery and what the incision would look like, etc, but nothing could prepare me for what I saw.  My first reaction was to cry.  It was very hard to see him like that.    Luckily Owen was still out of it and spent the rest of the day sleeping.  I thought about what he would think when he woke up, about the pain he’d likely feel.  It was a very hard place for a mother’s mind to go.  We had to make this decision though.  We felt there was no other choice.  We had to make the seizures stop.  We were told it was his best shot at a more normal life.  Because he was still so young, I thought it unlikely he’d have any memory of what had happened that day.  I hoped and prayed that would be the case.  I hoped that he wouldn’t hate us some day for this decision we made for him and the deficits he’d have as a result.

It was a long day.  One of the longest days of our lives.  We hoped the worse was over and this day would be the beginning of much better days.

My goal for this year was to write a blog post every month, and I did pretty good until October.  October totally got away from me.  Damn!  I had a fairly good reason, or excuse, however you want to look at it.

In March I committed to running the Chicago Marathon as part of Team Danny Did.  For those of you unfamiliar with the group, their mission is to advance public awareness of epilepsy and SUDEP (Sudden Unexplained Death in Epilepy), to protect those with epilepsy and to prevent deaths caused by seizures.

At the end of June, I began training in earnest, following the marathon training plan of my local running club, the Badgerland Striders.  Every weekend between late June and early October I had to find time to do my long run.  I started at 8 miles and eventually worked my way up to 20 miles.

Planning for my weekly long runs involved many moving parts, from watching the weather forecast to making sure I had someone to watch my son; to determining my route and figuring out the water sources on said route if I didn’t run with the aforementioned Striders; to making sure I had enough GU packs to keep me sustained and energized.  As the runs got longer, the time it took to complete them got longer and longer, making the planning process more complicated.  And, God forbid it rained all weekend.  On one of those training runs I was forced inside and ran at the track at a local ice rink.  Imagine running around and around a track for three plus hours.  It was mind-numbingly boring but I had to do it.  The long training runs needed to get done if I was going to be successful on marathon day.

Then, about a month before marathon day, the fear starts to set in, the fear of something going wrong and keeping me from running marathon day.  It’s about this time that I started worrying about every ache and pain I felt as the miles accumulated, thinking I would lose my mind if anything kept me from race day.  By this time, I had devoted close to three months to reaching this goal.  And, this time, I was running or a cause near and dear to my heart, which made me want to complete the task even more.

Finally, October 13th came and I was ready to go.  I had made it safely to race day.  What a relief!  Nothing was going to stop me now from finishing the task.  Not the rotten sleep I had the night before.  Not the stuffy head I woke up with compliments of the start of a cold I got from my son.  Not the aches and pains in my right hip, leg and knee….NOTHING!  I was ready to get this show on the road.

The marathon started in waves, with the first wave taking off around 7:30 AM.  This is when the world class athletes took off, along with other runners much more talented than I.  I was part of the last wave of the last wave taking of around 8:30 AM.  The wretched refuse of the running world.  They wanted us in the start corrals at 7:30 AM, so that meant waiting outside in the chilled October air for an hour waiting to go.  The weather was going to be perfect for the run, about 45-50ish degrees and sunny, but it was not perfect for standing around.  By the time I finally got to the start line, it was close to 9:00 AM.  My feet and body where chilled from having stood around in the cold so long, so when I took off, I felt like the tin man from the Wizard of Oz and my feet felt like I was wearing cement shoes.  No jack rabbit start for me.  Not like that was going to happen anyway.  Who am I kidding!  About a mile in, I started to loosen up and get into my pace.

This marathon was by far the biggest I’d ever done, with 45,000 participants.  10,000 of those runners were like me, running for one of 170 different charities.  Every mile of the course was lined with people cheering us on, which was amazing.  I took the opportunity to slap hands with lots of people on the course, mostly children, elderly folks and two handsome young men with Down Syndrome by the Charity Block Party.  The course winded through many different Chicago neighborhoods.  When I visit Chicago, I rarely get much past Michigan Avenue, so it was cool to see other parts of Chicago.

Things were going pretty well until I hit mile 20.  It felt so good to get that far, but then I realized I still had at least another hour or more of running to go.  So close, but not so close.  This is where the body started breaking down.  The right hip and leg pain started kicking into high gear.  I wasn’t the only one feeling that way.  Everyone else around me looked like they had had it too.  Some were walking more often than they were running, some were by the side of the road stretching their fatigued muscles, some were visiting the Biofreeze tents that were now at pretty much every aid station.  We were meandering through the final stretch looking much like zombies.  Nobody was quitting though.  We had come way too far to quit at that point.

One of the best billboards I saw along the course said “Run Like Clowns are Chasing You.”  Anybody who knows me knows I hate clowns.  They just plain creep me out.  I saw this billboard somewhere between miles 20 and 24.  Much as I hate clowns, I chuckled and thought to myself that not even the creepiest of clowns chasing me could get my body moving faster at this point.

Also showing up somewhere between miles 22 and 24 were the fine folks at Goose Island Beer Company, handing out beer for anyone who was sick of hydrating with just plain water or Gatorade.  I choose to partake.  What the hell!  It was only a little dixie cup portion and maybe it would deaden the pain in my leg a little.  It didn’t, but it was still worth it.

Finally, mile 26 came.  Only .2 miles to go.  The longest .2 miles ever, and uphill to boot.  What masochist designed this course!  But then, it appeared, the sweetest sight ever, the beautiful banner proclaiming you had finished…you had finished the marathon.  You were a marathoner!  Although I had finished a marathon before, the feeling you get completing such a feat never gets old.  It’s such an amazing feeling of accomplishment.  Such a euphoric feeling.  It’s even better when they place the medal around your neck, the physical proof that you finished.

Both times I ran a marathon before, I vowed never to do it again, but then I did.  This time I made no such vow, because you never know.  I don’t have any plans to do so in the near future, but will I do it again?  You never know.

As I think back on this experience, now more than a month in the rear view mirror, I find a lot of similarities between training and running a marathon and raising a child with special needs.  Some days are easier and you think to yourself, I’m crushing this.  Some days are like miles 20-26, a lot harder and you feel like you’re not going to make it.  Like you’re a failure.  But you do keep on going because not moving forward is not an option, not in running a marathon, or in raising your child.

In late June 2010, we started the process of surgical evaluation.  The first step was inpatient long term monitoring.  At this time, Owen was a seizing machine, so we had no doubt he’d put on a good show for the doctors and give them the data they needed.  When we spent most of our waking hours hoping Owen would not seize, it certainly felt weird rooting for the opposite.

I wish I could recall all of the details of this hospital stay, but time has made the memories a little foggy.  I do recall his first seizure could not be fully documented because we had to disconnect the equipment and move into the hall for a Code Black.  The Code Black was called due to a tornado warning.  You don’t want to be caught in a hospital room with a gigantic window when there’s a chance of a tornado, no matter how important it is to capture data.

I also recall the seizure Owen had right before I was going to leave the hospital as it was my turn to get to spend an evening at home.  My mom was going to take me home and had gone downstairs to get her car to bring it around to the front of the hospital.  Right after she left, Owen had an epic cluster of seizures that went on for about 30 minutes.  That was not uncommon for him at that time.

Before we left the hospital, Owen had his PET scan.  At that time, the hospital didn’t have it’s own PET scan equipment.  The equipment came to the hospital and we had to go into a mobile home of sorts for the test.

After a week or so stay in the hospital, the data was gathered.  Now, all we had to do was wait for the doctors, the big brains, to have their meeting of the minds to determine if Owen was a surgical candidate.  We waited, and waited.  During that time, all we kept thinking about was what if surgery was not an option?  What then?  What would we do?  We knew the odds were not in our favor with regard to finding a medication cocktail that would calm the seizures, as Owen had already failed numerous medications.  We knew that by the time you failed two or three anti-seizure medications, the odds of finding one that worked became slimmer and slimmer.  We didn’t even want to think about that.

We continued to wait, and wait.  We waited for what seemed like an eternity.  Owen’s first birthday in late July came and went and still we had not received an answer.  Finally, about six weeks after our hospital stay we got our answer.  The answer was YES!  Owen WAS a surgical candidate.  Yeah, we get to let the doctors remove half our son’s brain.  If you had told me a year earlier, the day Owen was born, that I would be wishing for this at his first birthday, I would have been horrified.  What a difference a year makes.

Shortly thereafter, we went to speak to the doctor to find out what she recommended.  Our hope, of course, was that she would only recommend removing a small portion of Owen’s brain.  She told us that the seizures seemed to be coming from the right side of Owen’s brain.  Given the information she had available to her, she recommended a right hemispherectomy.  Of course this was the most drastic option.  Go big or go home, right?

They explained that after the surgery the left side of Owen’s body would be weaker than the right, kind of like if he had a stroke.  His left hand wouldn’t have much in the way of fine motor control and would be more of a “helper” hand  His left leg would be affected too, but not as badly as his hand.  He would also have a visual field cut on his left side.  Luckily, I had first hand experience of what that would mean for him as I had a right sided visual field cut due to my stroke.  It would mean he and I would both be accidentally walking into people if our heads weren’t turned just right.

We worried how the surgery might affect his personality.  Would it change?  Owen was a happy, happy boy in spite of his illness, with the sweetest disposition.  We did not want that change.  We were assured it would have no affect on his personality.

What made our decision to move forward with the surgery was that if it was successful, Owen had a 80% chance of being seizure free and leading a more normal life.  How wonderful it was to have hope after the nightmarish year we’d just endured.  We decided to move forward with the surgery.  Given the odds, the decision was a no-brainer (pardon the pun).

Our decision made, they told us of an epilepsy study they were doing and asked if we wished to donate the brain matter they removed from Owen to help with the study.  We said yes….without hesitation.  We thought it may help Owen someday, and if not, perhaps someone else would benefit from the research done on Owen’s brain.  Why not put a positive spin on something so negative?

The surgery date was set for October 20th.  I will never forget the morning of the surgery.  I was both relieved and horrified that the day was here.  We had to be at the hospital bright and early.  I remember waking Owen up to get him ready.  Poor thing’s hair was a mess, not because he just got up, but because of the hack job I did on it the night before.  I don’t know why, but for some reason I decided to cut a few locks of his hair to keep.  I ended up giving him a very shabby looking mullet.  Of course he rocked the look.

My little mullet boy woke up in such a good mood that morning.  He was so happy and full of smiles, even more so than usual.  He had no idea of what the day held in store for him.  I took a picture of him before we left for the hospital.  It’s one of my favorite pictures, but to this day, I can’t look at it without feeling a little sick to my stomach.

We arrived at the hospital where Owen was prepped for surgery.  Before we knew it, the time had come and we had to leave our little boy, still smiling, with the anesthesiologist.  It was the hardest thing we’d ever had to do.  Even though we knew we made the right decision, we couldn’t help but second guess ourselves in that moment.  After all, we were making a decision for Owen which would affect the rest of his life.  We left Owen and headed to the waiting room where we would wait and wait and wait.

I got my start in running a little later in life, at the age of 34.  I was inspired to give it a try by my friend, Lorraine.  I really should thank her for her inspiration because running has proven invaluable to my mental health over the past 19 years, especially so in the last 10 years after I became a mom to a child with serious health issues.

Several other friends started running around the same time I did.  It was fun participating in 5k’s together and sharing our war stories at the end.  Much to my dismay, however, I quickly discovered I was much slower than everyone else.  Being a competitive gal, it truly bummed me out.

Since I wasn’t going to be faster than everyone, I decided I would run farther than everyone else.  I eventually worked myself up to running 10k’s.  I toyed with the idea of running a half marathon, but knew that would take some dedicated training and I didn’t have time for that.  At the time I had no kids.  With the exception of working full-time, I had all the time in the world.  Oh how time changes your perspective.

It wasn’t until I went through my own health scare in 2009 and had Owen and was dealing with his ever changing health issues that I decided to try a half marathon.  That was in 2011 when Owen was two years old.  It proved to be really difficult and I was sure I’d never do it again.  But, I did.  Eleven times so far and counting.  My husband and I even pushed Owen through a half marathon in a jogging stroller as part of My Team Triumph.  Truth to be told, my husband did must of the pushing in the later stages as by this time, Owen was about 50lbs and his weight coupled with the distance was a bit taxing for me.

After finishing my first half I thought to myself that I could surely never complete a full marathon.  I had barely survived the 13.1 miles.  How could I ever go twice the distance?  About 3 years after completing several half marathons, I decided I was going to tackle a full marathon before I turned 50.  I signed up for my first marathon at age 48.  I figured if I didn’t make it the first time, I would have another year to give it a go.

When I was training for my first full marathon in 2014, Owen was very ill.  His neurologist at the time said he was in sub- clinical status.  While he wasn’t seizing all the time, his brain was trying to seize all the time.  This left Owen listless and lifeless.  He got to the point where he was no longer even able to sit up on his own.  And, nothing we tried as far as medication seemed to be able to touch it.  I think what helped me stay somewhat functional during this period was all of the training I was doing for my first marathon.  During my short training runs (3 – 4 miles) Owen tagged along in our Bob jogging stroller.  We logged lots of miles on our trusty old Bob.

Thanks to all those training runs with and without Owen, I made it through my first marathon in October 2014, the Lakefront Marathon in Milwaukee, Wisconsin.  Although finishing was a truly euphoric feeling, I vowed never to do it again until I did in 2017 when I completed the Cellcom Green Bay Marathon in Green Bay, Wisconsin.  Again, I vowed never to do it again until I signed up for the Chicago Marathon this spring.  I felt the need to do it again for the cause I was representing, seizure awareness.

I am running the Chicago Marathon as part of Team Danny Did, an organization founded by Mike and Mariann Stanton who lost their child, Danny to SUDEP (Sudden Unexplained Death in Epilepsy).  Their mission is to prevent deaths caused by seizures by advancing public awareness of SUDEP.  Since I fear losing my child to SUDEP, I couldn’t help but support their efforts, which is why I’m choosing to run another marathon.

So, Owen and I are back to our training runs.  Luckily he is in a better place healthwise, but still not seizure free by any means.  He has accompanied me on my short training runs.  Although I don’t have the physical stamina to push him through my longer training runs -currently I’m up to 12 miles at this point- he is definitely there with me as my inspiration.  Also inspiring me on is the promise to myself of a deep dish pizza at Gino’s East following the marathon.  Can’t wait!

By June of 2010 we were seven months into our nightmare known as epilepsy.  Our baby boy continued to seize and continued to miss milestones.  It was depressing and heartbreaking.  We were desperate to make them stop.

About eight weeks or so out from Owen’s first birthday, we went to see a new neurologist at our local children’s hospital that came highly recommended by a co-worker of mine.  It wasn’t that we didn’t think our current neurologist was doing a good job.  We just felt that Owen’s case had become too complex and we needed to kick things up a notch.

When we saw the doctor, she mentioned that epilepsy surgery might be Owen’s best hope for achieving seizure freedom and having a more normal life.  By this time, we had read much about different types of epilepsy surgeries, so this didn’t scare us.  Crazy as it may sound, we were excited to discuss surgical options.  One, if successful, it could mean the end of his seizures for good.  Two, it could also mean he wouldn’t have to spend the rest of his life on anti-seizure medications.  The first of these two would be a dream come true.  The second, would be the icing on the cake.

She mentioned that children who have Infantile Spasms and fail to get the seizures under control could progress to a severe form of epilepsy called Lennox Gastaut syndrome.  Now epilepsy surgery can mean just removing a brain lesion, to removing part of a lobe of the brain, to a whole lobe, or even an entire hemisphere of the brain.  It all depends on the seizure focus.  Of course, we were hoping that as little of Owen’s brain as possible would need to be removed for him to be seizure free.  Unfortunately, the doctor speculated that Owen was going to need a hemispherectomy in order or his seizures to go away.  Go big or go home, I guess.  And, that option would only be available if his seizures were isolated to one hemisphere of his brain.  If the seizures proved to be starting in both hemispheres, well, then it was game over. Surgery would not be an option.

When the doctor mentioned the word hemispherectomy, she paused, as I think she thought we’d lose it.  We didn’t, however.  Quite the contrary.  We would have had we not already been well versed on the topic, but since we spent most of our free time on the internet reading about epilepsy, we’d already become desensitized to it.  Sad, but true.

Before we started on our journey with epilepsy, I wouldn’t have even thought it possible to live with half a brain, but you can.  A hemispherectomy is a surgical procedure which involves total, or partial removal of an affected cerebral hemisphere or disconnecting the affected hemisphere from the unaffected one.  There are two types of hemispherectomies, anatomical and functional.  An anatomical hemispherectomy involves removal of more brain tissue and can cause more complications, such as blood loss and hydrocephalus.  A functional hemispherectomy involves removing less of the affected hemisphere and disconnecting the rest of the brain tissue from the other hemisphere, with less chance of the aforementioned complication.  Which procedure is done depends on the patient’s issue.  Both result in seizure freedom in about 70% of the cases according to the Cleveland Clinic.

In order to determine if this was even an option for Owen, he’d have to have to go inpatient or long term monitoring (EEG) to see where the seizure focus was and have a PET scan.  Once those were done, his case would go before a board of medical experts to determine if he was a surgical candidate.

While we certainly weren’t delighted with the prospect of having to decide to have half of our son’s brain removed, the alternative, a life of continuing, unrelenting seizures was much worse.  The seizures needed to be stopped in order for Owen to have any chance at a somewhat normal life.  Given that, we needed for him to be a surgical candidate.  The thought of us being told otherwise was simply unthinkable.

We left the Mayo Clinic with our new drug in hand and high hopes.  Since the beginning of our journey with epilepsy, we knew through the countless hours we’d spent scouring the internet that Sabril had worked for many children with Infantile Spasms when ACTH had failed.  Why wouldn’t it work for Owen too?  Unfortunately, Owen was not to be one of the children for which it worked.  Ah, another drug failure.  Good times.

Sometimes, rather than controlling seizures, an anti-epileptic drug (AED) can do the opposite and actually activate seizures.  This was Owen’s reaction to Sabril.  After beginning Sabril, we noticed an increase in Owen’s seizure activity – a dramatic increase.  By the time we reached the so called therapeutic dose of Sabril, Owen was seizing more often than not.  And, if he wasn’t seizing, he was sleeping.  I remember going out for Easter brunch that year with Owen in tow.  By this time, Owen would have been 8 months old.  As most of you with typically developing children know, taking a child out to a restaurant at that age can be a daunting task.  Fortunately, or unfortunately, however you want to look at it, we had a peaceful outing.  Our 8 month old baby slept through the entire meal, looking adorable in his “Baby’s First Easter” outfit.

After it became apparent Sabril was not working for Owen, it was time to look at other options.  Our neurologist recommended we try the Ketogenic Diet rather than trying another AED.  Why not?  What did we have to lose?

Lately, the Ketogenic Diet, or Keto Diet as the cool kids are calling it, is all the rage for weight loss in normal, healthy human beings.  However, back when we first heard of it in the spring of 2010, it was completely foreign to us.  For those of you not familiar with the Ketogenic Diet, it is a high fat, low carbohydrate diet that has been proven to help control seizures in some people with epilepsy.  The goal for someone on the Ketogenic Diet is to achieve ketosis.  Ketosis happens when the body runs out of carbohydrates to burn and burns fat instead.

So, it was off to the Mayo Clinic again to get started on the Ketogenic Diet.  The purpose of the hospitalization was twofold; one, to get Owen’s body ready and acclimated to the diet, and two, to educate us about the process.  Because this was to be a shorter stay, we both decided to stay in the hospital room with Owen.  Needless to say, this made for some very cramped quarters.

Now, about the diet.  Because Owen was still an infant, the diet was going to be relatively easy for us in that most of his calories would come from a formula called Ketocal.  The rest of his calories he would get via “snacks” he would get 3 times a day.  I firmly believe my son’s aversion to food stems from his Ketogenic Diet snacks.  For example, snacks consisted of one of the following:  butter, mayonnaise or heavy whipping cream.  You read that right.  That meant literally feeding him a glop of one of those three.  The snack would also consist of some type of baby food, which looked incredibly unappetizing –  can’t imagine it tasted any better.  There was a third component, which I believe was a little bit of baby food fruit.

As indicated in the title, we accidentally threw out Owen’s first Keto snack.  We ordered dinner for ourselves through the hospital food service.  The meal came with these curious little condiment cups which we thought nothing of.  I’m not that fond of condiments for the most part, so I didn’t even check them out.  A short while later, we called the nurse and told her we never received Owen’s meal.  We were told it had come with our dinners.  So the contents of those little condiment cups were for him.  People, a little heads up would have been nice.

The amount of formula and food Owen could have needed to be precise – very, very precise.  He could have no more, or no less.  The components of each of his snacks needed to be weighed on a gram scale.  When going to sites to order one online, we got the impression we were not their target market, if you know what I mean.  We were also told to use a spatula to scrape the remaining food from the plate so that he got every last morsel.  Yes, we needed to be that precise.  As you can imagine, this caused a lot of stress.  He had to eat the food whether he liked it or not, and, if he was hungry for more, he couldn’t just have more.  There was a lot of back and forth with a dietitian in the beginning to make sure Owen was getting enough to eat while also achieving ketosis.

How would we know if Owen was in ketosis?  That required checking his urine against a test strip.  So, with each diaper change we needed to put a cotton ball in his diaper to catch urine we could use for the test.  Squeeze the urine drenched cotton ball on the test strip, and voila, you get your results.

Despite our best efforts, achieving ketosis proved elusive.  We were in weekly contact with Owen’s dietitian at Mayo to tweak his diet in an effort to achieve consistent ketosis and to address his weight issues ( he lost a pound shortly after starting the diet).  At the height of our Ketogenic diet journey, I decided that we might have a better chance at consistent ketosis if we did a better job of spreading his Ketocal intake out more evenly throughout the day.  As part of this effort, I got up every night at midnight and 3:00 to give him some of his daily intake of Ketocal.  I was so locked in to this schedule that while on a business trip in a different time zone, I woke up precisely when it was time to give him his bottle.  Looking back now, I’m not sure how I did this and still was able to function as a normal human being during the day.  Maybe I wasn’t functioning normally and no one had the heart to tell me.

All these efforts would have been worth it had it worked.  Unfortunately, it didn’t.  While we were no worse off, we were no better off either.  Owen continued to seize.  By this time, Owen could have clusters of Infantile Spasms that would last 30 minutes or longer.  They generally happened in the middle of the night and were preceded by a blood curdling scream.  It was time to explore other options again, the next to be much more drastic.