Recently, my sister and I were talking on the phone, partly about my blog. She told me that I probably didn't want to hear what she was about to say and then went on to mention that several of her friends had stopped reading my blog because they found it too depressing. That depressed me. But then I got to thinking.

While posting something to the blog daily since I began writing it over fifteen months ago I continue to assess its content. Is it too raw? Is it too dull? Too monotonous? Too dark? I usually end up asking Michael first. He reminds me that, although my goal is to promote epilepsy awareness, I write from the heart, I write how it is for me, for Calvin, for our family—no holds barred—and that I shouldn’t worry if it's too depressing for some to read. Then I ask a handful of trusted friends their honest opinions and I generally find consensus; that although at times it's raw—hard to read—it is hopeful, honest, real. But I still try to find ways to sprinkle in some humor, happiness and dreams into my dialog.

In my cyber travels I came across a mommy blog that struck me. It is written by a woman whose 21-year-old brother died from SUDEP: Sudden Unexplained Death in Epilepsy. At the top of the blog is a remarkably beautiful photo of the author with her husband and two young, ostensibly healthy, children frolicking on a lakeside swing set. She writes:

While I sometimes struggle with the challenges of daily living, ultimately I am happy and feel blessed. Meanwhile the Internet seems to be a breeding ground for negativity. There are blogs and social media pages filled with negative judgments, biting opinions, and sad stories.

So the Happy Blogs are my little solution to the daily barrage of negative energy. I write about happy stuff. Sure, icky stuff happens to me and everyone else. But mostly, life is good.

All I could think was that having a brother with epilepsy—even one who died—must be very different than having a child that has epilepsy or some other chronic condition. Being the upbeat, eternal optimist that I am, I too think that life is pretty damn good, but it’s also effing hard, though I never really thought that until Calvin came into my life.

During the holidays a loving friend who has known me since I was in junior high school sent an electronic greeting card of sorts with a photo of him with his wife, kids and grandkids. He mentioned how he has a picture of me and Calvin on his computer desktop and that he prays for Calvin’s health, peace and well-being every time he sees the picture. That brought tears to my eyes. He also mentioned how, in his words, “kids make Christmas especially fun.”

I wrote back to him:

To be honest, having Calvin makes Christmas especially hard, particularly when everyone else is have so much fun with their kids over Santa and presents and school concerts and craft-making and baking—I could go on forever—and we spend the day like any other, supporting him as he tromps around the house, hoping we can prevent a bad fall or a bump on the head and fearing the next seizure. I write this not to make you feel bad but rather to let you into our lives, if only just a little bit more, as I know you love us.

I never heard back from him. I’m just hoping that no news is good news, but I fear my frank email might’ve been hard for him to take.

And then, a reader—a stranger to me—whose son has epilepsy wrote to me recently, the morning after her son had spent the night in the hospital because of a bad cluster of seizures:

So I just want to thank you for all the help you’ve given me, just by being a comrade, even if you don’t realize it. Taking a few minutes each day to read your blog has been my time to just breathe, as that’s all I can do on some days.

Simply reading her message confirmed for me that I'm doing what I need to be doing.

It's true, I do write about some pretty icky stuff in my blog, but it’s the stuff of my life, I just tell it like it is. I guess, if it's too depressing for some, there are probably oodles of happy blogs out there that will make readers feel super-duper, hunky-dory and A-okay, which is fine and dandy with me.

photo by Michael Kolster


  1. There are also people who don't read the newspaper because they find it depressing. Luckily, her friends and are not your friends (and yours probably read both the newspaper and your blog!). Treasure your own friends and blog-friends who treasure you. And perhaps remind your sister that if she can't say anything nice, she might consider not saying it at all ....

  2. One persistent and consistent reaction I have to your posts is how amazingly honest you are, which takes a special kind of strength. It is that quality that allows me to come close to understanding what epilepsy is and does. And understanding how devastating it is motivates me to want to help. So to answer your question, yes, it is sometimes depressing--but one would have to be less than human to understand epilepsy and NOT be depressed at times. That answer doesn't go far enough. Your joy in and love for Calvin and the humor you can see in some of his situations is at the same time infectious and anything but depressing. It is uplifting, a testament to the human spirit. Write on, Christy!

  3. Keep "Shakin'" things up, Christy!! This blog is not about making other people comfortable!!! It's a noble thing that you do here. And yes, they can all go read the trillion and one happy shlappy mommy blogs that are out there...xox

  4. People never want to hear the truth about epilepsy. When I talk about our son, they still think he'll grow out of it or a pill will do the trick. They get scared to hear bad news.

  5. Yes, it is true your writing moves me to tears sometimes. At other times, it brings a smile to my face or a guffaw of laughter. Occasionally smiles, laughter, and tears all at once.

    It motivates me to share Calvin's story, to donate, to act. And always, always, it helps me to pay more heed to the beautiful, painful, joyful world around me. Thank you for sharing that with us!

    As you said yourself in a very not-depressing post:
    "... I seem to look closer at nature, at circumstance, at life. I feel more deeply, discern subtleties, linger on images—moments—that before writing I might have missed. "

  6. Please do not change what or how you write. The easy path is rarely the right one, at least in my experience. Your raw honesty provokes soul-searching contemplation, and thankfulness that there are loving and caring people like you in the world. The world needs more of both.

  7. Christy: to join the choir, don't pull punches. There are many stories. The most transformative are those which are honest and complex--the most human in other words. Simple stories are usually happy stories that in the end rarely lead to either understanding or happiness. That may be the historian in me speaking, but any number of other writers or artists would agree.

  8. Dear Christy,
    I never found your posts "depressing" I find them "sad" sometimes, that's for sure. It is sad to witness what Calvin is going through. Your stated mission of the blog is to raise awareness about epilepsy so you might be focused on the "bad" sometimes but for that purpose. Besides that I could not find something "good" in epilipesy or every other suffering experience. Still there's, of course, something good and beautiful also in the suffering but it's more in our response, in our reaction, in what moves us,in what we experience never in the fact/event itself. I mean I can feel your sadness but also your love with no limits for Calvin and this comes together with your sadness: something as good as love but I would never thank epilepsy for that...Life is.
    Sometimes I ask myself why do I read a blog where a mom is desperately crying out help for her little son, a blog that chronichles suffering (not only!). It would be really selfish if we need to read abiut other people's tragical challenges to appreciate what we have. It would be an offense to life. I must appreciate what I have not as a comparison to those who don't. Personally I stopped by here because I felt truth, honesty, sincerity (in Italian). And when I feel an honest writing, it's universal. I might not be experiencing extreme suffering right now but it concerns everyone, noone left behind. Like joy, sadness is universal and so I can feel compassion. It's touching you right in your everyday's life but do you think it couldn't/wouldn'/will/has happen(ed) to me?
    Besides that a dear friend of mine had a young son who has gone through quite the same condition Calvin has, so your writing enabled me to imagine what she was going through (she's a catholic, a believer, her frame it's different but she never denied the suffering, the injustice, no divine purpose did she ever see in her son's suffering).

    P.S. Excuse me for my poor lexical choice, my misppells and grammar mistakes.

  9. Christy, I came across your blog a while ago and have been reading faithfully ever since. You are honest and your writing goes under my skin. And you do exactly what you set out to do: raise awareness.

    I'm a new mom to a healthy 9 month old boy. Knowing about you and Calvin makes me hold him this much closer, be that much more thankful, patient, content. I now know the kind of love all mothers share across the world: profound, deep, unconditional. Your love for Calvin shines through with every post.

  10. This post makes me question my own motives. Why do I read your blog everyday? It is sad. Very sad. Frequently I cry, sometimes for you and your husband, sometimes for Calvin. I feel helpless because there is nothing I can do to help besides bear witness. But there is an amazing strength in you, and you offer an honest human connection. I can't say for sure why I started reading Calvin's story, but I come back every day because I care what happens to you and your family.

  11. thank you all for your amazing support. you readers keep me going. xoxo, christy

  12. Thank you for writing this amazingly real and yes raw blog. We too, are a family suffering from Epilepsy and I share so many of your feelings (in particular the disdain for candy-coating life). Calvin and I share a birthday and I will forever think of him on Feb 7th. We are in the beginning of our journey and I am still holding out hope for surgical intervention. I try to remain resolute and determined to give our little Maecy whatever independence she can achieve. Most of all, I want to be a Mom like you, that helps her child be as happy as possible amidst this monster of a disease. He is precious and has thoughts and prayers from Hawaii.

  13. dear alecia,
    i am sorry to hear you are struggling with this monster, too. sounds like little maecy has a good mama. know that you are not alone. it makes it easier somehow. feel free to friend me on facebook too, as a way to share the blog. hang tough.