I didn’t imagine having children, so never before did I think that I would be a mother to a 16-year-old. But here you are! Fully formed human, playing basketball and video games, picking on your sister, back talking. Yes, you’re a teen.

You’re also my first, and it’s hard being the first. At anything except maybe finishing a race, which is OK if that’s your thing. You were our guinea pig. Our little man, who is a beautiful combination of your dad and me – my long legs and his great hair, with more than a touch of impatience and an Italian nose. More than that, you were born from love, and we hope you’ve felt that love every day of your young life.

Because you are loved. And you are young. Even though I have aged little more than a decade – it feels closer to a lifetime. Let’s be honest: You were a hard first kid to have, babe. Yeah, you didn’t sleep through the night … you waited until you were 4 for that. And you didn’t say momma or dada or any other word until you were at least 2. You missed a lot of milestones, buddy, and your mom and dad sweated each one.

Most parents don’t know what their baby is thinking and experiencing, and you were no exception. But with you, well, there was a lot more happening in that brain of yours than the average toddler. We didn’t know. So, we worried. And then we did know. And we worried more.

You did it all while we held your hand, sang and watched so very much TV because you had a lot of medication in your system and couldn’t do much more. So we snuggled. (You’re still a great snuggler!) And we loved you harder.

We endured hospital stays and test after test, together. We tried one medication. Then another. And another. And another. We had surgery. And more surgery. And more. And although you appeared to sail through it with your happy spirit intact, mom and dad did it with less of a smile – at least when you weren’t looking.

Just before surgery, you had another life-changing event: you got a sibling. You loved that little person … smiling at her and offering her your toys. We never imagined you, and we didn’t imagine her either. But everyone deserves “their person,” and we wanted you to have at least one person in this life who would always be there for you. Sometimes, that feels like a lot to put on someone. But hopefully we’ve shown you both that you are loved and that you are in this life to give love, so that caring for each other never feels like a burden.


Like all kids, you grew! You love school and not once have you ever complained of going. Not even during fourth grade when your school let you down – big time. It still makes me sad. And it makes me angry – really angry – when I hear about how kids with disabilities are sometimes treated at school. Seriously.

As you may one day see, as you grew, so did we. Not that we didn’t make mistakes along the way. We did, and we learned from them – and are still learning! I was an insecure mom, but now I’m a warrior mother who wouldn’t think twice about moving heaven and Earth and anyone who says you “can’t” or who puts you down out of your way.

And your dad, well, wow, I can’t speak for his side of the story. I can only tell you that you’re one of the luckiest kids ever to have a dad so committed to love, acceptance and putting his own needs aside to lift you up. You won the lottery with this guy, son. And quite honestly, so did I.


On this momentous occasion of your sweet 16, we can’t help but think of all you’ve experienced in that short time. You have miles ahead, my sweet, and I can’t walk with you every step. So, as always, we love you. And when you push us, we love you harder. And all along the way, we try to smooth the bumps in your path and prepare you for a world that we hope will see you as you … a boy who loves his family, a boy with autism, a boy with epilepsy, a boy who takes longer to learn things, a boy who loves ice cream and bowling and who personifies joy on a basketball court.

You are awesome and you are loved, and although the world is sometimes dark and scary, you light it up for everyone who knows you. Happy 16!


Our Story of epilepsy

You know that your baby isn’t hitting all of his developmental milestones. And when he crawls, he sometimes stops and tilts his head for a few seconds before crawling away.

Late one night/early in the morning, you’re up feeding the baby, now 9 months old, when he suddenly stiffens his arms and legs and holds still for about 10 seconds. Not that you remember the specifics because your mind is yelling, “What just happened?!” It was so brief, you want to dismiss it. But your gut tells you something’s not right.

You mention this at your next well-baby visit to the pediatrician. Who suggests you see a neurologist. Which you think is ridiculous.

You go to the “local” hospital, one at the university and not the local hospital in your town of 3,000. The university hospital has a neurologist who sees you a couple of times and then keeps you overnight on Labor Day after another episode of “stiffening.” Seeing your baby in a bed that looks more like a prison than a crib is somewhat horrifying. You don’t know it, but this is the first of many hospital visits that make you wonder if this is real life and that weighs you down with guilt, stress and worry.

After the overnight stay at the university hospital, your neurologist sends you to the city where there’s a bigger hospital and a more renowned neurologist. You used to work in that city, at a large health system, in fact, so you feel comfortable navigating the system and reassured that experts will finally figure out what’s going on with your son.

First visit: you’re told your son probably has epilepsy, and the doctor gives you a brochure and sends you home. You’ve been in hospital marketing and have created these brochures, which now feel like an insult. You sob the entire two-hour trip home.

And then you go back. Repeatedly. For three years. Overnight EEGs. Medicine you try for a couple of months only to switch to something else and start over because that medicine didn’t work. You have more tests. You have to hold him down, physically laying your body over his, so he can be sedated. Your heart breaks.

Despite what you’ve been through, or maybe in spite of it, you opt for epilepsy surgery. Oh, and you have a 3-month old. Who refuses a bottle.

The first surgery is postponed because he has a cold. So you go home, Lysol the house again and try to keep two small children well for another couple of weeks. Then, it’s surgery time. For two weeks, he goes in and out of the OR while the neurologist, who looks like Doogie Howser for those of a certain age, moves wires around on the surface of his brain, which aren’t removed until the very last surgery.

Yes, your 4-year-old has wires sticking out of his head. He also loves for you to sing before he goes into surgery (which you try to do without your voice catching), he loves hitting the automatic door opener into the OR (which makes the medial team laugh), and he enjoys hugging the nurses when he wakes up in the ICU (which they love).

You can’t believe you have such an amazing son. And such a wonderful doctor. The other doctors, who you’ve seen in the elevator, look at their feet when you enter. They know what you’re going through, and they know what you can’t and won’t see: there is no cure.

Once your eyes are opened to the unthinkable, your neurosurgeon offers you one last bit of hope. You don’t know what to do. Crying, rocking your baby (Did I mention she wouldn’t take a bottle and you are physically and mentally drained?), you beg him to tell you what he would do – even though you know doctors don’t like answering that question. You do it anyway. And he tells you.

You take his advice and send your son in for one last surgery. You nurse your baby under a blanket in the waiting room because hospital social workers don’t find you – or a private room to nurse – until two days before you leave. You then wait for your son’s surgeon, in the doorway of the waiting room, like always. He sees you waiting and hugs you, like always. Your son’s OK; time will tell.

You feel something like love for this person who has your child’s life in his hands. You sense he cares; that he sees you. And that doesn’t go unnoticed, because as the parent, no matter how much health care knowledge you have or think you have, you are invisible except to sign forms. But your doctor is smart: he knows you’re making the decisions, he knows that you know your child best, he knows your fears and your hopes, and he’s taken the time to earn your trust. He knows that a child is connected to his or her family and that by taking care of them all, he’s caring for the child.

You leave the hospital – without a cure – on what still feels like the happiest day of your life. A month goes by with no seizures. You think your prayer may have been answered. And it was … just not in the way you wanted. The good news: he’s no longer having up to 17 seizures a day, which your husband has literally charted in Excel in hopes of spotting a pattern or uncovering a clue. In fact, the seizures are so few you can drop one of his three medications. And then another.

And then you keep going, reading all you can about epilepsy and managing therapy and psychology appointments so that he can get the right services in school. You spend a lot of time at the pharmacy and with teachers. You manage it. YOU. Doctors don’t talk with therapists or teachers and vice versa. Each person is responsible for a different body part. A different function. What lives in one world is not connected to the next except without you: your time, your diligence, your research and your love.

You put one foot in front of the other. You take each day as it comes. You take nothing for granted. You stumble. And you still cry. And you makes mistakes, and you learn from them. And you promised to do better, to be better. For him … and also for yourself.

You learn that this may be your story, and although it broke you it doesn’t mean you can’t make yourself whole again, embrace the cracks and imperfection, let go of expectations and write the next chapter.

What I learned

  • Ask questions and be an advocate for yourself and/or your loved one. It doesn’t mean you’re being disrespectful. It means you’re a partner in finding solutions – and health.
  • Take notes. After appointments, your mind will be swimming and you’ll think you heard and remembered everything. You won’t. Take notes and look at them later with a loved one or health professional to make sure you understand what was said. If possible, bring a loved one with you to compare notes.
  • Seek out alternatives and trust your gut. You know yourself, your body and your loved ones better than anyone. Explore services and resources that can help them – and you. Don’t like what the doctor recommends? See what alternatives exist.
  • Remember, you’re lucky if you have access to health care and health insurance and the ability to make decisions about your own health and that of your loved ones. Many don’t have that option.
  • Remind yourself that no one is perfect. Mistakes will be made. By health care providers and by you. It’s OK.
  • Take care of yourself. You’ll think you’re strong and don’t need help. Get it anyway.
  • You may not want to talk about it because it only makes it more real. Do it anyway. There’s no shame in talking it out with a counselor or others with a shared experience.
  • You won’t always get the happy ending you want, but it will be OK. You just may have to redefine “OK.” Love endures.
  • A diagnosis WILL change you. And your family. Make it for the better.

Finding beauty in the broken: From the other side of diagnosis

I was recently given an “assignment” from a community group, in which we were tasked with writing a health care scenario in order to help participants think about navigating the health care system from multiple perspectives. As usual, I got a bit carried away and wrote not just a teaser for my story but pretty much the whole darn thing. Again.

I first wrote Our Story during diagnosis and updated it to reflect later surgeries and developments … and as the curtain of emotion began to pull back, allowing time and perspective to shine light on the darkest chapter of my life.

This story, without me realizing it at the time, allows for that light. And although I cried many tears, this time was different. Something shifted. And that shift was how I think about Our Story. How it defines me. How I’ve let it define me in good ways and bad. I’m kinder. I welcome and respect all people, of all abilities, colors, religions … I’m more compassionate. I cry more easily.

I’ve also let Our Story define me as someone who is broken. Who is weakened. Who will forever be defined by this chapter.

This was my a-ha moment, despite the challenges and worries each day continues to hold: I’m not broken. And neither is he.

This reminds me of Kintsugi (or Kintsukuroi, which means “golden repair”), which according to My Modern Met “is the centuries-old Japanese art of fixing broken pottery with a special lacquer dusted with powdered gold, silver or platinum. … This repair method celebrates each artifact’s unique history by emphasizing its fractures and breaks instead of hiding or disguising them.

“Kintsugi often makes the repaired piece even more beautiful than the original, revitalizing it with new life.”

New life. New beauty. A new story. Which I hope you’ll read along with lessons we learned along the way.

Build it and I will write?

Would I finally do it? Answer that voice whispering, “Should.”

Ugh. “Should.” No one ever succeeded at anything because they should. They’re passionate and caring and have a story tugging at their heart. So they DO. And I’m doing it. After always finding a reason NOT to do it. To write.

I can’t help it. These stories, these thoughts, these worries and insights, they keep crashing against the shore of my own stubbornness. Flowers trying to thrive in the garden of my neglected literary life.

Neglected? Yep. Working full time, managing two kids and their activities, checking off the 1,345,654 DIY project on the house, trying to plan an occasional trip OUT of the house, and oh yeah, letting my husband know he’s like, awesome sauce.

Life is hard, people.

Like you don’t know.

What I haven’t mentioned, the so-called elephant in the room, is that one of those two kids of mine is a 15-year-old with a cornucopia of physical and emotional needs.

Epilepsy. Autism. Intellectual disability. Sensory issues.


Sixteen years ago, I was 29 and working in corporate communications for a large health system in St. Louis, Missouri. Loooooooong story short, we had a baby. Six months later, we moved. To my hometown. Of less than 3,000 people. Did I mention it was my hometown? You know, the one I swore I would never live in as long as I was still breathing?

Yeah, that one. It formed the backdrop for a diagnosis I never thought I would hear and a process of dealing with its implications that will last the rest of my life.

I started “dealing” with those soon after his diagnosis, blogging out the process as a way of processing my own feelings. You can read about those early years of juggling medications and doctors’ appointments, social services and other interventions, including epilepsy surgery, in this post.

It’s not exactly light reading, but I hope it’s enlightening, especially if you’re facing a diagnosis of your own.


I will write a lot about Aidan. And my 11-year-old daughter, who is giving me a whole different set of growing pains to manage. But there’s lots of other things to talk about in this big, messy life.

Kids, life, work, aging. Four short words that combine to kick this Gen-Xers ass on a daily basis. All good stuff to write about, discuss, debate, and cry and laugh about over a bottle of wine.

I am thankful I live in wine country and am equipped with all the essential tools of my generation: sarcasm, cynicism, skepticism and even slactivism.

I’ll do my best to use them for good as I tend my new garden, plant ideas and sow hope, understanding and acceptance not only for Aidan and others like him, but for all of us as.

We’re all in this together, folks. As Jim Morrison says, “No one here gets out alive.”


In the beginning … a story of epilepsy

I began this story soon after the diagnosis that would change our lives forever. And I tweaked it for years after … updating it as time went on and Aidan changed, medications changed, doctors changed. This is our family’s journey through diagnosis, treatment and redefining the perfect child.


My son has epilepsy. And for years it took every ounce of love and courage I had to say it.

Like most mothers, I thought I had the perfect child. Aidan was born with big, chocolate brown eyes, long eyelashes and a beautiful bow-tie mouth. At 9 months, he was crawling and exploring every inch of the world within his reach. From time to time, he would stop in his tracks, tilt his head and appear deep in thought. After a few seconds, he again was on his way. I talked with his pediatrician about his faraway looks, but without more to go on, and no other symptoms, there wasn’t anything he could tell us. Seizures were never a consideration. At least for me.

Childhood seizures are more common than most think – about 45,000 children are diagnosed each year in the United States – and occur for a number of reasons. Most childhood seizures are “febrile seizures,” which are caused by a sudden and dramatic rise in temperature. Although scary, most childhood seizures are not life-threatening and do not reoccur, which means they are not epilepsy.

Seizures are triggered by abnormal electrical activity that causes a change in behavior, sensation, movement and sometimes consciousness. By definition, epilepsy is two or more unprovoked seizures, meaning they are not caused by some external factor, such as fever. Most people who have had at least two seizures will have more.

Aidan had his first noticeable seizure at around nine months. While rocking together late at night, he suddenly stiffened. His arms and legs became fully extended, and I thought he stopped breathing. I did.

After that first seizure, and the many others that would follow, we were referred to a pediatric neurologist, who still wasn’t sure Aidan was experiencing seizures.

We were told to write down the number of episodes he had each day and learned our first lesson in diagnosis: details count. After going over what we were seeing for what felt like a million and one times, we learned that as our neurologist listened, he was comparing our story to a detailed map of the brain’s function. Depending on how well the “stories” matched up made a big difference in the diagnosis. So, we wrote down what we were seeing and even managed to videotape a few of his episodes.

The neurologist then ordered an MRI, which was normal, and Aidan was started on one anti-seizure medication, then another. After no progress, we spent Memorial Day weekend in the hospital with Aidan’s head dotted with electrodes that recorded his brain activity. Again, the test was normal.

After a year of more questions than answers and with Aidan’s first year of life punctuated with terrifying episodes we couldn’t explain, we still didn’t know more than we did at nine months. Our neurologist was as frustrated as we were and referred us to a colleague at St. Louis Children’s Hospital three hours away.

A turning point

After another overnight EEG sleep study where Aidan’s brain activity was recorded and this time he was videotaped, we finally had an answer.


The scale was beginning to move toward the point where we now had slightly more answers than questions, the biggest one being: What do we do now?

First, that meant getting Aidan on medication that would treat the specific type of seizure he was experiencing. There are more than 30 types of seizures, and the more than 20 commonly prescribed anti-seizure medications on the market are used solely and in conjunction with other epileptic drugs to treat each type. Getting the right combination is a matter of know-how – and luck. Researchers still don’t understand exactly why certain medications are effective at treating seizures; they just know that they are.

Two new medications were introduced, then a third. And although the number of Aidan’s seizures dropped from up to 17 a day to a fantastic seizure-free two weeks, they did not stop altogether. And adding or substituting a new medication was unlikely to help. After two medications fail to adequately control or stop seizures, the possibility of another drug being effective is less than 3 percent.

After eight months, our neurologist again laid out our options, and we soon began tests to determine if Aidan was a candidate for epilepsy surgery. Once considered a last resort, neurologists are considering surgery much earlier than ever before because of its increased safety and efficacy – and the hope that you can “fix” the problem and set straight any deficiencies before the child begins school or wants to drive. The risk of mortality and complications is very low, despite the fact it is surgery on the brain, which means there are lots of unknowns.

As we prepared for surgery, the question on everyone’s mind was: “where specifically in the brain are the seizures coming from?” To answer that question meant yet another overnight EEG video study, with Aidan’s head wrapped like a mummy, a rainbow of wires leading from his head to a child-size backpack that became his shadow for three long days. A sedated PET scan, SPECT scans, psychological testing and an MRI followed.


Still, as Aidan headed into surgery we didn’t know where this “electrical storm” in his brain was starting. And we certainly didn’t know why, which isn’t unusual. In seven out of 10 cases that question goes unanswered. What we did know is that the effects of epilepsy are cumulative and progressive. If gone untreated, his development could become increasingly delayed and he could face an increased risk of injury and even death. With surgery, his seizures could be reduced or eliminated, and his cognitive skills could get back on track.

That is, of course, if they found the seizure focus, which they did not, despite placing electrodes on his brain in three different places during three separate surgeries.

As a last resort, doctors presented us with another option, a procedure called MST or Multiple Subpeal Transection, a surgical technique that cuts certain connections between nerve cells. They thought it might help. But then again it might not. And any additional surgery meant facing a plethora of surgery risks – stroke and infection being of most concern. After weighing our options, we agreed with doctors that we should go the full measure. We had everything to gain. It was thinking about what I could lose that was most difficult.

Aidan endured the experience with a strength of spirit that astonished everyone who cared for him. And after two trips to the hospital, three weeks and five surgeries, we came home dejected, exhausted, thankful and even hopeful, which lasted an incredible seizure-free two months. Then, the seizures returned, taking away any hope of the “fix” I had longed for. I believed in science and medicine, which failed me. I also had faith in God. And the road past believing He had failed us has been long.

The experience also cemented what I had so vehemently and irrationally refused to admit: My son has epilepsy. His childhood was not and would never be normal. His future hangs in the balance.

One day at a time

Of course, life doesn’t stop or even slow in the face of unfolding personal drama. Before surgery, we focused all our energy into doing everything possible to understand the root of Aidan’s seizures and stop them. Post surgery, we put that same energy into furthering his development, the most important being his speech. We constantly find ourselves asking, “can he do this task – or won’t he?” Other important questions relate to what is affecting his development and speech – the seizures themselves, his medication or both? Also, what do we do about it?

If living with epilepsy can summed up in one word, it’s “worry.” Worrying he will seize in public or at school. Worrying he’ll fall and hurt himself. Worrying about how others will treat him. Worrying about his development and if we’re making the best educational decisions for him. Worrying about providing the right discipline and guidance. Worrying for the future man he will become.

And if living with epilepsy equals worry, it requires patience in equal dose. Not being physicians, it’s easy to armchair quarterback those making the decisions. And to a big degree, it’s our job. We are our children’s biggest advocates. We choose physicians we can trust and hope they make the best decisions based on what is known. Unfortunately, with any disorder affecting the brain, there are lots of unknowns.

Until we know more, we’re doing all we can in the meantime to help Aidan live the fullest life possible. Aidan began kindergarten at 5 and received speech, occupational and physical therapy. At 11, his PT goals have been met, but fine motor skills and speech in particular remain a challenge. He can beat every kid on the playground in his monkey bar skills, but is still learning to read and do basic math. The fact that he is not alone is small comfort. Of the more than 500,000 kids under 18 who have seizures, about 65 percent have some kind of special need.

Despite the fact Aidan still had one or two seizures a month while on two medications, we were able to wean him from the drug with the greatest known side effects, especially regarding speech. And the good news is that his seizures are decreasing – and his speech is improving. Instead of six seizures a month, he now may have one or two – and sometimes none. The caveat with this piece of good news is that we suspect he may be having seizures early in the morning, as he is coming out of deep sleep – also not unusual in those with seizures.

In the meantime, we continue to work on finding the drug combination that best works for him. If the seizures continue, other options exist, such as vagus nerve stimulator, the ketogenic diet and complementary forms of medicine, which we may consider, keeping in mind that with each treatment comes a side effect that may outweigh any potential benefit.

It’s unlikely he will outgrow his seizures, even though about 60 percent of children do. But there is always hope, and that’s all anyone really has. We don’t know why this has happened – in fact, doctors don’t know the answer to that in 70 percent to 75 percent of cases – but that burning question has kept me up many useless nights agonizing over the unknown.

Heavy on my heart through this entire experience has been disappointment, sadness and even despair over his diagnosis, and I’ve mourned the loss of my perfect child. It wasn’t until a year after surgery that I could begin to focus not on loss and what this disorder has taken away from Aidan and our family but instead on all the things my beautiful child has to offer.

A sign hangs in the pediatric ICU of St. Louis Children’s Hospital that reads: “This experience WILL change you. Make it for the better.”

That advice has haunted me, and I have taken it to heart. Aidan may never live a “normal” life – without epilepsy, neurologists and extra help in school – but he will live a life full of love, support and hope.

No matter what this disease throws our way, we will never give up, and we will never let this tear our family apart, despite its strong grip. Aidan is, after all, a lesson in love. He’s a happy boy with big, chocolate brown eyes, long eyelashes and a beautiful bow-tie mouth. And he is perfect.