Leo Clement

There is something about this time of year with all the feasting and fairy lights and cozy fire places that challenges all the bad things in the world to kick it up a notch or two. Ever notice that? On one street corner they are serenading those merry gentlemen and the next street over in a dark and sad corner someone's heart is being broken.  How terrible, I think to myself, as yet another tragedy comes to my notice, that it all happens now, during that "most wonderful time of the year." What irony! Can't evil take the holiday off like the rest of us? I remember that dark Christmas we spent in the hospital with Leo two years ago now, indeed I couldn't forget it even if I tried since Facebook has this nifty new feature which shows you old postings again and again. Honestly, this feature I could live without just fine. Don't they realize that some memories, like that ancient jar of something you can't ever remember to throw out, are best left in

No snow in Vermont yet, but some pretty frosty mornings! So we've been spending some time at home lately...a lot of time actually... So much time in fact that in my mind, it's what hibernation would probably feel like, just without the actual sleeping part. Leo's been having a rough couple of months, and I never know which way the day will go, so that makes planning outings ahead of time kind of a non-issue.  Ever since the return of the seizure monster the Lion Boy has just been "off."  Phrases such as "off" or "just not himself," are phrases that doctors in general abhor hearing. Mostly because they require some kind of diagnostic response, but give no usable information to help with that... But woe to a doctor who ignores these phrases because as everyone knows there is nothing more accurate than a mother's instinct about her child's health. And consequently a mother's wrath if she thinks her worries are being igno

Shoes are good right? Shoes go on feet so that feet can do their thing; like walking, or running, jumping, and heck, even dancing. Nika asked me the other day (she's very into the who did what questions lately) who was it exactly who invented shoes? She elucidated that in her bible book Noah is wearing sandals, but Adam and Eve aren't, so one can assume that somewhere between the snake and the boat someone invented shoes. I can only think that like everything that was lost in the fall from Eden, so was lost our impervious and hobbit-tough feet. Hence the need for shoes.  I love shoes, don't get me wrong- I'm female after all -but today I had a pretty singular shoe shopping experience that wasn't one to raise my dopamine levels. Leo got his AFO's yesterday. And man, there is nothing cut loose about them. But the idea here is that they will help shape his ankles back into alignment, because right now he's got some pretty big

A thousand words... Or so at least every parent wants to think as they take picture after picture after picture of their child. That's like billions of words! That's got to be good right? Seriously though, who doesn't take pictures of their kid? Who wants to be "that" parent who doesn't shell out for school pictures? I have to admit I am almost willing to run the risk of being "that" parent because dang, those school pictures sure ain't cheap. And God forbid you change your mind and decide to get an additional digital version instead of the hundreds of useless teeny prints you thought may have been a good idea at the time (I plead insanity); they will not only charge you again for the same freaking image AND unless you pay more, it's a stupid useless teeny tiny thumbnail. Whew, ok rant is over... Whose with me? Let's do a school picture strike! Ok now it's over. But. I suppose in the long run the aggravation might be wo

This past Wednesday, we took Leo to Boston Children's Hospital to get a second opinion from their docs at the Epilepsy Center. As you know, this fall season has gotten off to a pretty rocky start in Camp Lion Man. We've had it all: an increase in seizures, allergy reactions to meds, strange side-effects, and general re-haul of all of our assumed norms and expectations. When it rains it pours... And thunderstorms... With scary lightening. But when I was a kid I would always run towards the storm to watch it out the window or the safety of the doorway and glorify in its power. When we had the blood moon eclipse a couple of weeks ago, I couldn't help but feel a flash of fear as the dear old moon suddenly became a stranger; as cataclysmic forces moved ponderously in their own mysterious dance in the heavens totally and completely outside of any human opinion or control. How come nature never checks if we want a bloody moon or flood or hurricane? Jeez. My fe

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part

"Back to the hospital?! You're joking right?!" I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. Day 1 Day 2 (rash got progressively ang

We got back yesterday from a three day/two night stint in the hospital figuring out what is going haywire in Leo's noggin. He just hasn't been himself for over a month and this past two weeks the seizures have ramped up into a whole new level for him and us. I don't have to say that it was scary. Wait, yes I do, because it always helps my emotional state to say or write things as they truly are. I felt completely bowled over by the uncontrolled and wild seizures that I felt were eating up my bright little boy. The worst of it was that I wasn't being taken seriously at the hospital. I felt like I had to run a triathlon filled with an obstacle course at the end of which there would be a phone that someone would actually answer intelligently and helpfully. Finally I threatened and coerced enough semi illiterate secretaries to in their turn, bully the orcs in scheduling to actually get my son in for an EEG before the snow flew. Once Leo was in, things went a bit bett

So as a shameless book nerd it perhaps comes as no surprise that the passage running through my head right now as I'm sitting and thinking about my son's seizures is the title of a chapter in a Harry Potter book (Order of the Phoenix in fact). I did say I was a nerd. Anyway, the name of the chapter is "Dudley Demented," and way back when I read it, (seriously way back...not last week for the hundredth time. Really..) I always got a chuckle from that title. Today though, I feel myself commiserating with the hapless and pathetic Dudley because Leo's seizures remind me of dementors; creatures of evil who suck everything good and happy from your soul. Can you tell I'm a teeny bit upset? A friend asked me today what I feared the most from this new trend of seizures and after a moment of thought, I realized what I feared the most wasn't hospitals or medicines or surgeries, though those aren't very good either, what I fear the most is that the seizures w

Courage is simple really. Anything in life takes varying amounts of courage. You don't need huge amounts of courage to get up and go to work in the morning, not as much as say, getting up and into a hot air balloon drifting on random winds hundreds of feet above the safety of land.  But even with feet (or hooves) firmly planted, copious amounts of courage are often part of our daily life. Most of us may say, gee I don't have the courage for that, so I will stay safe; stay on the trail that is marked, the trail that is known, and the trail that is safe. But most of us also know that sometimes life presents a trail that is unknown; a choice that is not clearly labeled "safe." In this case, we can't go back, but it takes much courage to go forward.   Sometimes the choice is made for us, and there is nothing left to do but continue on, or if you happen to be in a hot air balloon, to continue up. I knew Leo was having seizures. They started a

We just got back from our annual trip up to Eagle Craig camp in the Adirondacks. (FYI we didn't run into any escaped jailbirds, as they were caught a couple days before we left.) Can you remember Leo almost four years ago visiting camp after his big head surgery? Whoa check out that swollen noggin! He spent most of his time in his blue special needs chair which he needed to support his head and body. We hauled that thing across the lake in a canoe. We hauled it everywhere. Because Leo couldn't move, much less sit up on his own. Don't get me wrong, I was grateful for the blue seat. It provided comfort and security for Leo and time off for my tired arms. However...now, after almost five amazing years of lion boy power, check out the his new blue ride. I find myself forgetting ALL THE TIME about Leo's handicaps: past and present. Is that normal? I suppose there is nothing normal about our parenting journey with Leo. He is the