Leo Clement

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than d...

So it's been a while. Hoping that all of you loyal Leo blog readers have been having a fabulous fall so far! Seriously, those of you old (and new) here, I still can't believe so many of you take the time to check in with the adventures of our little Leo cub. As the years have gone by, I've kinda figured out why I keep the blog up, but I can only assume why so many of you keep reading it. I hope that my reasons for writing are maybe the same reasons y'all keep reading....let me know if I'm wrong on that by the way... But. I think I keep it up, not just for my own mental therapy reasons (which are many), but because I'm hoping that somewhere, Leo's story might give hope and perhaps comfort to someone who may be hurting and lost because of a similar situation. Not that anybody's situation can ever be the same as anybody else's but I think you know what I mean. Fear, grief, uncertainty, medical trials- they pretty much are the same regard...

By the way, if you are wondering how we celebrated Leo's big day, wonder no more. He pretty much got his heart's desire... Unlimited access to the most wonderful, bestest, fabulous, infinitely appealing...The Upalator! Check it out and see if it was the greatest birthday thing ever, according to the Lion Man. ROAR! upulator from Anna DuMoulin on Vimeo .

So our little lion man is not so quite so little anymore! Tomorrow this guy turns six. Six years! Like the man himself says frequently: "wowsers." I find that as time rolls unchangeably on I have less and less words to say about being a special needs parent. When he was a baby and I was a newbie at all of this, and I thought (or acted like that anyway) that I had somehow gotten a compressed cliff notes chip that downloaded straight into my brain the moment that Leo was born. I literally became a master overnight and an expert professor over the time it took my section scar to heal. I had something to say about all of it! Anything on Hydro, Hydran, epilepsy, medications, surgeries, syndromes, birth defects; I was the go to gal. I even thought I knew all about Autism, vaccinations and even Downs syndrome. What the hell was I thinking? I don't actually think I was "thinking," I was coping. My way of dealing with a traumatic situation is apparen...

"Tests are a gift. And great tests are a great gift. To fail the test is a misfortune. But to refuse the test is to refuse the gift, and something worse, more irrevocable, than misfortune."     From Shards of Honor by Lois McMaster Bujold For some reason, maybe because there is more down-time, or maybe because the wretched humidity encourages such growth; like flies, summer is a time when the little larvae of insecurity and desires start to grow large, pupate and swarm... Ok, I may have bugs on the brain too this time of year, because as anyone who works outside can attest, bugs are the worst thing ever and ever.  So are bad thoughts. Thoughts that start out as larvae of resentment or frustration and pupate into full blown depression or anxiety that no bug dope on this earth is strong enough to relieve. Exhibit A:  A young(ish) mother with some of the world yet to see and live, accepts the gift of a child to keep, raise and love forever and eve...

 Today is Leo's last day at school for the summer, but not Leo's last day of Kindergarten. We are going to do a re-do of this year as it was just a teeny, weensy, bit rough in the school department. Between the astronomic number of daily seizures, all new therapists, teachers and school, there's been a nutty kind of flavor to our daily fruit cake of life. However, I think we finally started figuring things out a couple weeks ago, so fingers crossed that it won't take as long next year... A lot of the issues stemmed from simple miscommunication and lack of proper supports, and hey, it's not like I've ever done all this before. Leo didn't come with an IEP instruction manual.  But even with all the muddle on the grown-ups end, Leo managed to develop new skills, and despite all the wretched seizures too! His mobility has improved a lot making him independent on the stairs and upping his soccer kick. I can't believe it yet somedays, but he's ...

The vagus nerve is the longest cranial nerve. It contains motor and sensory fibers and, because it passes through the neck and thorax to the abdomen, has the widest distribution in the body. It contains somatic and visceral afferent fibers, as well as general and special visceral efferent fibers.  Vagus means “wandering” in Latin, and true to its name, the nerve meanders around the chest and abdomen, connecting most of the key organs—heart and lungs included—to the brain stem. It’s like a back door built into the human physiology, allowing you to hack the body’s systems. Vagus nerve stimulation, or VNS, got its start in the 1990s, when Cyberonics, of Houston, developed an implanted stimulator to treat particularly tough cases of epilepsy. That application was just the beginning. Researchers soon found that stimulation had the potential to treat a variety of ailments, including painful neurological conditions such as migraine headaches and fibromyalgia, inflammatory p...

These cheesy "awareness" pics I pirated off the internet just because. Most of you are aware (ha ha) of Leo's tribulation with seizures, though I've probably blogged more about MY tribulations with them. At any rate, you all know that seizures have taken hold of our little lion man at four months old. They started out fairly mild, and only I could tell when they were happening. He got put on one of the milder medications commonly used for seizures and for awhile we lived without thinking too much about it, because at the time we kinda had bigger fish to fry (like plastic reconstructive surgery etc) and anyway the medicine worked. Then came that icy wintery night that introduced us to the real world of seizures. A sixth sense woke me up in the middle of the night to the sight of my baby in the throws of a seizure the likes of which I have never seen before. And it didn't stop. After a sliding down our icy drive in the ambulance, it still wasn't s...

Leo's all hands these days. Leo's always got a hand reaching out for me. Always.  Even back when he was just a wee lion cub he was all claws. And um.. .Head . But really we mostly focused on his hands. For obvious reasons. Talking with his hands at only a few hours old... At almost a year old.. And so on... Regardless of the day, time, or his or mine emotional state, awake or completely sound asleep, he's reaching out to take my hand. Seriously, his hands are always there... Because of his delayed communication skills he's perfected the language of hands. And I don't mean Sign Language either, which Leo has had down pat for years, this is Leo's personal Hand Speak Dictionary. His High Five is exemplary. He almost never misses. The Boss hand (grabbing my hand to make it do things for him like push buttons, pick up food, turn on the bath, or really anything he doesn't feel like doing himself). The Baby Hair hand...

I may drop a lot of things off by the wayside, but I hope and usually assume that I'm not the only mom who does that. Unfortunately, I seem to have way too many talented friends who seem to juggle children, cookies, home baked dinners, husbands, and kodak family quality moments with truly enviable ease and negate my assumptions of solidarity in mom-failing. Case in point: our family Christmas photo card. Big fail there guys. As in, never really happened kind of fail. Anywho, I comfort myself that in the big and beautiful scheme of life, it's not really a big deal if the Christmas card doesn't happen. At least I fed my kids dinner right?  I also comfort myself with the fact that there are turbo-moms and than there are so-so moms, and also there are mamas and the real popular Ma! moms and in reality, if Christmas cards happen or not happen doesn't automatically put you in the so-so category or the Ma! category; in fact, it really doesn't affect the scales at al...