Potty Talk

While there may be a lot of potty humor in this house of boys, there’s not a lot of potty talk. We’re a silly and ridiculous family and all challenging topics are game for honest conversation, but mostly we keep it clean.

Mostly.

Now Liam, my first born, is a rule follower, of course. He never swears and he’s very quick to call me on it when my words get colorful. It’s absurd, when you think about it, me hoping I don’t get in trouble with my kid. So instead of being chastised by my teenager, I decided to change the rules.

Swearing is allowed for any and all of us in three instances – talking to a billing agency, dealing with insurance, and managing seizures. Now I can just hang up the phone and yell in freedom. Do your @*#(*@#&* job!!! Just pay the *#@(&@# bill!!

Liam has been known to quickly report to Garreth upon his return from work that, “Mommy had a sweary day.” They know I got s&#t done and it wasn’t easy.

And seizures. I’ll never have anything nice to say about them. Yes, sometimes we just ignore them and sometimes we attend to them with tenderness, sometimes we wait them out and move one. And sometimes we, now that the rule makes it acceptable, swear at them or about them or to them. “That was bull#h%t, Aidan. Those are mo-fos.” These are the moments to tell it like it is and these seizures are a theif and destroyer.

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I certainly don’t feel crazy all the time, as this photo may suggest. But today is the day my FaceBook feed will fill with people wearing purple, standing with us, sharing their own stories. We shine a light on Epilepsy to say it needs to be cured, gone from my life, or at the very least, treatable.

Oh right, Aidan’s Epilepsy has proven to be untreatable thus far. That’s the kicker. Yes, he’s started medical cannabis, but we don’t get that quick easy miracle story like others. We never do. So I take deep breathes, remind myself we’re certainly not at the end of the line yet, and garner my patience.

Today is Purple Day and this is why it matters to me:

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Seeing In

I’ve writtten and deleted this post a bazillion times in my head. I wanted to pull out all the stops and let you in, really let you in, to show you why Purple Day and this entire conversation is so important to me.

Yes, there are facts and figures about Epilepsy. There are stories too.

But I wanted you to see, really see, what seizures look like. I wanted you to see that they’re strange, and scary, and dangerous, but sometimes easy to miss. If you only know about seizures from TV and movies, like I did, you’ve only see tonic clonic (grand mal) seizures. It would be perfectly reasonable to assume that’s the only kind there is.

Unfortunately, that’s not true. There are many different kinds of seizures and different types of  Epilepsy Syndromes. Aidan has Lennox-Gastaux Syndrome and experiences myoclonic, tonic, and absence seizures.

I recently posted a video of Aidan using his talker and referenced the small seizure on there. Several seizure moms asked me to point it out. Granted, only a slight tremor in his hand was visible. But this, and other conversations I’ve had recently, have propelled me to consider posting video of Aidan’s seizures.

It was a video that led me to a neurologist, this video, in which Danielle, the mom, says, “I don’t think it’s a seizure.” Not only did that sweet boy go on to literally have half of his brain removed to treat his Epilepsy, but he’s also an exceptional boy who loves his siblings and speaks and walks and plays at the beach and does all kinds of little boy things. That video alerted me and changed my parenting course and I’m incredibly grateful.

That’s why I wanted to post video of Aidan, in case anyone else needed to see, needed a push to the neurologists office.

But I couldn’t do it. I can’t do it. I suppose I could say it’s to protect Aidan’s privacy and a bit of his dignity, but in truth, that’s not it. There’s something about Aidan not being there during his seizures. It’s not him. It’s also disturbing, perhaps not to you, but to me. I suppose it shouldn’t be because I see them all the live long day, but it is. I work hard on this blog for you to know Aidan, to be comfortable with him in your world, to see the good and the bad in our life. But his seizures are something else entirely.

While I won’t put video out into all of cyberspace, I will make this offer. If there are any parents out there who just aren’t sure, who really want to know what I’m talking about, email me. I do feel comfortable sending video to those who need it. If there are any medical professionals who want to be prepared and have only been schooled in tonic clonics, I’d also be happy to share video with you. It’s what I feel capable of in helping others.

There’s no clean way to wrap up this post because there’s no way to make seizures cut and dried. So I’ll leave you with my little bruiser. I know the black eye is a bummer, curtesy of a seizure, but that face….

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Will you join me in wearing purple tomorrow and stand with the 65 million people around the world who have Epilepsy?

The Cost of Breathing

Did you know that you bend your back a little when you hug? It’s so imperceptible that you probably just reached out as if to hold someone and realized it’s true. Your spine curves a little bit to get closer. That’s the work and freedom of each tiny vertebrae that brings you near to another, holds your heart closer to theirs.

And if each of those vertebrae are fused together in one solid, unbending line, there will always be a gap between you and another person. Two bodies that need to be close will be awkward and clumsy and just a little more distant than the heart wants.

I know this because Aidan’s body won’t melt into mine any longer. Yes, he’s growing up, long and lean like his brother which was always sure to hold a space between us. But his spine, the titanium rod holding it together, the cadaver bone sprinkled like jimmies on ice cream… that is the real theif.

A friend wrote of her son’s getting older:

Does the plane of the back change
once it’s not yours to examine, heal, caress?
When the open-mouthed laughter
the tiny, square teeth,
the round cheeks
are not yours to kiss anymore
will your own mass change?

Certainly Aidan is supposed to grow up and away from me, but what about when growing up still requires so much physical care? I know Aidan’s body in an intimate and unique way that I don’t always want to. Yes, I love that his neck smells like chocolate in the summer. When he pulls me in close to feel my hair on his face, I fill up with his sweetness. I both appreciate that his body is small enough for me to maneuver and lament that he’s still the size of a young child. I find great joy in the strength of his body when he pushes himself around the house in his wheelchair, finding the leftovers from dinner and sneaking those last morsels.

But mostly I resent when his body betrays him. While his seizures have caused no lasting damage to his brain, they have put him in danger. Aidan has hit his head, bitten his hand, and fallen over when he seizes.

And sometimes they scare him.

Just last night he cried uncontrollably when the seizure was over though he hadn’t injured himself. I instinctively drew him to me for comfort but he didn’t fit. I’ve changed the very contours of his body that bring him close to me.

Certainly he needed spine surgery to have room to breath and strength to walk. But there was a price that I didn’t consider. He’s not pliable like he used to be. He leans over to me rather than molds into me. It seems silly to count that as a cost for breath and strength, but there it is… the softness I miss.

So I depend on different love to bring him comfort. Whispering words hoping they have power. Holding his face to mine wanting healing. Waiting, being, breathing. This pain will pass and I will be here.

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 March 26 is Purple Day, the day to bring attention to Epilepsy. Epilepsy effects more people than MS, CP, Muscular Dystrophy, and Parkinson’s combined yet receives fewer federal dollars per patient than each of these. One third of the people living with Epilepsy live with uncontrolled seizures because no treatment has worked for them. That’s my Aidan and he’s why it mattesr to me. Please join us in wearing purple this Thursday.