Finding Answers we’d Rather Not – Seizures

Logan Sleeping In the silence

I crept in the kids’ bedroom earlier today where Logan was sleeping, after collapsing in fatigue late this morning.

I found him in two ways; as a vision with his pale sheeks and dark lashes creating a picture of innocence that was overwhelming in its intensity; and seizing, his left arm a moving target, disconcernable by the constant, rhythmic beat of his little hand against the Spongebob blanket.

In the same way that I sometimes hate this monster called autism, I am equally captivated and appalled by the beast, epilepsy.

In the back of my mind, the duality of the scene that had greeted me won’t let go.

Find the Answers

Logan is a mystery to us much of the time. The past days of increased anger and contrary consistency have been an unavoidable reminder of this reality.

In the silence of his unexpected drop to the sofa earlier I had wondered about the possibility of seizures. I dismissed it when he got up acting like the world was his enemy, again. Then, a half-hour later, this happens, and I am faced by the evidence as he sleeps snuggled under the Spongebob blanket.

No way, I tell myself at first. He’s just moving a little in his sleep.  As he shifts under the covers, his side is further freed of confinement under the blanket, and the slight movement I noticed before is a steady beat of jerky movement under the cover. Like a drum, pulling me in to the silent drama of the moment.

And it is drama, it is a dramatic situation of sorts.  Except I have a hard time explaining reality as drama, which brings to mind the imagined and the over-emotional.

The truth  is that in his long moments of mild seizing I remembered that I had a child with epilepsy.

How crazy is that?

I had been lulled into a strange sort of complacency because he hadn’t had obvious seizures for a few weeks. I was able to tuck that part of our reality back in the corner of my mind and pretend.

And in the reality

I remind myself, yet again, of all my failings as a parent. How could I missed some obvious sign that this was the reason for his changed behavior? Am I reading too much into it?

There I go again. It’s so easy to pull everything back on my shoulders, claim responsibility for acts over which I have no control. Why do you think that is?

I’m just a mom. I try my hardest. I say that, but believing it is another thing entirely. I wonder if it is a measure of dealing with it all. Maybe, because if it is something I did, something that I had control over, that means I also have the power to change it.

And I don’t. Not in the ways that would fix this, anyway.

And the reality of that is something I didn’t really want to be reminded of again.

It hurts.

So you tell me. Are there times when you have been forced to face something you didn’t want to? When you were eased into complacency because one of your child’s conditions hadn’t raised its head for a while? 

Tell me about them. Remind me that in this I’m not alone. Because it hurts, this reminder.

What’s your story?

Other reads you might have missed, about Logan:

That Face Does Not Work on Me!

Hope for Logan (New Research into Non-Verbal Autism)

The ironic, in light of today: Sometimes a Cold is Just a Cold

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://www.simplywebly.net Webly

    The scariest time I had with my son was when they kept telling me he had a heart murmur and I had to wait until he was old enough to know if it went away. I remember deciding to either be happy with him or just worry until he was old enough. It was hard to leave it to God, I did. After seeing a specialist, we find out he was ok.

    Thx for sharing your story. Take great care of your little angel.

    • http://katscafe.wordpress.com katscafe

      Thanks for commenting Webly, and for sharing. Heart murmurs are scary business for sure, I'm so glad it worked out for your son. It's so hard leaving it to God.
      Thanks and I will!

  • http://newliphe.org/ New Liphe

    Spectrum Fyuel

    Hi Kat,

    You're a GREAT MOM and you are not alone…

    I know you are doing everything you can for Logan your other boys. I will NEVER second guess a mother or father…

    As far as I am concerned, any parent who has held their child in their arms and thought of nothing, blocking out everything, so they would not have to think the unthinkable – they deserve a metal.

    The only think harder is going home after standing at the grave of the child you loved so much. And doing that with a few different children.

    I have been a papa for 38 years, I liked it so much I decided to torture myself with the pleasure by adopting… I have a special boy in my home right now in "batch 4".

    "Oh God moments" is what I call them. When his lungs spasm and he can't get air and is turning blue, and you can't get to a hospital in the middle of the night because I live in the Philippines. He could only breath when I held him up and down under his arms pits, my arms shaking, racked in pain, but I could not set him down, let him turn blue and die. Oh God – Give me strength.

    I could tell you dozens of times I felt like a failure as a parent – but that stands out the most. Because I suffer with them…

    Here is something that helped us…

    For 52 years I had "behavioral problems" – my ex-wife sited that nearly every late afternoon I would do unexplained, unpredictable, and angry things. (Hint: A few hours after eating lunch.)

    The first seven years of my life, 90% of what I said was one word, "Why?" At age 7 my father tried to murder me because of epileptic fits. My grandmother took me in, and the seizures stopped. Grandma hated "junk food" (read that anything in a package, can or jar).

    Only in the last 5 years did I realize that what people call "food" (poison?) was a major factor controlling my life. Every person who has looked at the fyuel vs food (poison) issue has seen improvement! That amazes me.

    At age 4-5 we saw the same things in my son (he is now 12). But this time a doctor gave it a name… (All these years later we joke about "spectrum" being from evil "Specter" in an old James Bond movie! All they wanted was money!) But this is real.

    About 5 years ago I was nearly dead, bedridden 6 months, with doctors wondering how I could stay alive. It was then I read an article in a throw away magazine about Gluten and Celiac Disease and Autism. In my mind I became convinced that my many serious diseases were all part of one disease, Celiac. High Blood Pressure, IBS, Heart Disease, Gout, Diabetes, Angina and Obesity (when they measure your weight in fractional tons, believe me you weigh too much!). Could Anger be a Disease?

    Everyone told me I was nuts and did not have Celiac. Everyone being my doctors, ALL of them. So I started firing doctors till one agreed to have me tested… You have already guessed that I have it. Or do I? In retrospect a very good doctor who has become my friend says I cured myself of Autism, as well as a number of "incurable" diseases.

    I have made radical changes in my diet, much more than just gluten free. I eat almost no cooked food (do not start here), and I am plant based. I went gluten free, then GF/CF, then to the Specific Carb Diet (originally for Celiac but used today mostly with Autism). Finally I developed a passion for "Fyuel" – the food the Bible says we should eat. I kept researching all the crackpot people out there too. Through all this my son tagged along because he saw his papa getting better! Suddenly I realized HE was better too! Fyuel worked for him too!

    I saw miracles! Today my boy is in regular school. Yes, a bit behind, but he is catching up. All the fits and rage and emotions and yelling are gone (me and him) and we have a beautiful peaceful life.

    I am not going to say this will work for you or your kids. I do not know you. But it worked for us and dozens of others here in the Philippines. I have two doctors here in the Philippines that refer people to us… Just to learn how to eat better… To be healthy. They call it the Philippine Cure, we call it a New LipHe (say "New Life").

    Today we believe we are "just normal". I do not have Celiac "Disease". No one is Autistic (I hate that word!). We just react badly to "poison" (or picotoxins as we call them) that other people seem to be able to resist, and they call it food (even though I am sure it is a major contributor to cancer!).

    I am all about design and what works!

    We now have a healthy distrust for doctors. My wife started to realize the symptoms I have when I eat gluten or any other like substance (believe me HFCS can be worse and it is "gluten free"). She started to notice a "gluten like reaction" when I took a certain pill. We found out that this pill is loaded with both Gluten and Casein!

    I think the average parent with a child with a "spectrum" knows more about Autism than any doctor. People may have Autism, but there is no Autistic Children!

    I am also concerned about Frankenstein (GMO) food! Ever notice the more "Industry" (making money) the more illness? What if the Food Industry makes you sick and you go to the Medical Industry and then to the Pharmaceutical Industry and the Hospital Industry.

    What if your child would improve if you fed him good healthy Fyuel? For us it is no longer a what if!

    Grandma always did say, "Eat more Vegetables, they will make you healthy." and "You are what you eat!"

    Doctors aren't perfect, they are only in medical practice!

    Lan Tait

    http://newliphe.org/<a&gt;

    • Katrina

      Lan –

      Your emotional story highlights something that has worked for not only your family (yay!) but many families I know. We went through the testing for the Celiac disease, and we tried a few of the different diets out there, under the encouragement and care of doctors, but they weren't the answer for us.

      I'm leaving your entire response in because I think others would find what you have to say interesting, and because I always welcome encouragement! We are a family that believes in eating healthy foods (the kids don't always agree with mom on this!), but we're always trying to do better. While I think that genetics had a lot to do with our kids' many issues, I firmly believe environment still effects a large influence on whether a kid reaches their full potential.

      Good luck to you Lan, and to your marvelous family. I'll look forward to touching base with you again in the future – I love to hear success stories about folks like you and your kids.

      *hugs*
      Katrina "Kat"