Leo Clement

So this winterish spring time has, so far, been hard for us all at Chez DuMoulin. It seems to have permanently frozen in that time between the two steps forward and one step back. Many of you know that we've been faced with a housing change, and though that doesn't necessarily mean that it's bad, but what it does mean is change  (and I'm not a big fan..) Change that we aren't quite ready for. Since then we've jumped both feet into the housing/real estate wonder (not) land and gotten pretty disenchanted. We still have time to find a new lion den for our lion cub, so its not grim as all that. But the tenacious and frigid winter has not given up yet around here, so the doldrums continue. To really ice the cake, Leo has been pretty ill this past week; starting out with a few mini seizure episodes and turning into full blown infections in his ear, chest, and unfortunately, urinary tract. Oh yeah, fun times! Yesterday was spent in the ER with him, running the st...

Everywhere I look these days I see the catchy headlines which go something like this: "The top 5 (or 8 or 10) Things You Need to Know About ___(insert topic here). And I get all excited thinking, oh boy, now I'm really going to learn something useful, but after clicking on these articles and reading them, I'm left with not a whole lot more than what I started with. The articles seem so promising! The top ten things you need to know to have a great marriage! The top five things about epilepsy! The top eight things you need to know about Ukraine! The list goes on, and yes, perhaps there are things that I "need to know," but for whatever reasons at the end of my perusal, I still know pretty much the same stuff. It's exciting to think that in the few brief minutes spent on these articles, I will come out educated and enlightened and it's just another dash of reality when instead I'm left feeling unfulfilled. So with that said, I present to you my own vers...

This trumpet vine looks like something out of a horror flick, but in the summer it's the most glorious example of totally out of control life. It's been more then a month now since our Christmas and New Years bomb and I'm thinking about gratitude. Why is it so hard to be grateful? Instead of enjoying this relative lull in the chaos, I'm slinking around on eggshells, jumping at shadows, and in general making a mess out of things while waiting for the other shoe to drop, because it's not possible to have a horizon free of impending doom! I'm that screwed up ya'll!  No, but seriously, it's been kinda difficult to really APPRECIATE the incredibleness that is Leo. His recovery has been nothing short of miraculous. After two surgeries, eleven days in PICU and about a month and half of shunt failure and hydro pressure, he's BAACK! Not only is he back, but he is roaring back like a biker in spring! It's totally awesome.  His therapists are in th...

"Suffering passes; to have suffered, never passes. One could say the actual experience passes away, but to have gone through an experience, never passes away. We are made into other people through an experience once received; even if we forget about it later, even if consciously we are no longer aware of what happened to us once upon a time." -Met. Anthony Bloom It's so easy to get caught up in the "infinite moment" of trauma, and forget that tired old bag of a cliche: time heals all. Because in my experience, it really doesn't heal anything. Time just gives us breathing room to grow in understanding and acceptance through whichever woe is upon us.  Lately I've been seeing and hearing a lot about the specialness of hurt. In the special needs world there is a general consensus of feeling misunderstood, ostracized, and in some cases, despised. These feelings often spur a rash of articles and writings around the Internet about the mistreatment and...

I can sympathize with war vets, who upon returning home just sit and stare out the window day after day, trying and failing, to assimilate the events of the past so that they can partake of the present. Of course, we don't have it THAT bad. I mean I didn't happen to kill anyone though there was a moment or two when I did consider it. (The shunt clamping episode comes to mind) And thank the Lord that Leo is home and recovering, so that's all good. However, who ever knew emotions to be practical thinkers? Nah; emotions just fly chaotically from the part of our brain that is covered with lizard skin. Rationality doesn't even venture near that neighborhood. All's well that ends well sounds like a good idea, but it's awfully hard to put into practice. Perhaps this time we are a bit older, or maybe it has to do with this brutal cold winter we've been having, or the fact that our cars have decided that this was the perfect time to start acting up and breaking d...

So yesterday, true to their word, we were set free!  Leaving the PICU is always strange and sometimes anticlimactic. After all the snafu of the past week and half, you would think that there would be a fanfare, or at least a parade with kazoos as we triumphantly march Leo through the doors, instead of the quiet nod and wave from the nurses at the nursing station. But I get it, because it's a place where not everyone gets a lucky getaway. Walking across the unit to the WC, it was impossible not to peek into the other rooms and wonder about the stories of suffering of Leo's little neighbors (though there were some teens in the unit too).  Discharging took forever, as usual, and by the time we were ready to go it was already the afternoon. When we told Leo it was time to go home, he started crying he was so worried we were pulling his leg. He couldn't seem to believe that his tribulation was over until we actually got him into the car. And then he couldn't stop giggli...

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu...