Leo Clement

We all know about the resolution stuff. Every December 31st we faithfully think about what went wrong this past year, and about what we can do this new year to make it better. We think about ourselves, our situations, our hopes and dreams and from that colorful canvas, we try to pull out some key components and loyally promise to change or fullfill them. Yeah... How's that going for you? Hopefully better then it goes for me. I start out with strong intentions, and by the end of the year, the backwards path is littered with them and I am in the same place where I started. Maybe because they were the wrong ones?  Needless to say, most end of Decembers, I just get depressed about last year's failed resolutions, and never even get to the new year ones. So this year, I'm going to try something new. Instead of mindlessly pursuing the acceptable norm (and failing it), I'm going to go out on a limb. How about, instead of resolution , I shoot for anticipation . I mean,

I have, yet again, grew my respect for parents who live every day with a "wired" baby; a child who goes through life trailing medical accessories like some kind of neurotic prima-dona. A baby who when picked up, instead of a swooping gesture of love, it becomes a process of actions and movements, no less tender however, and maybe perhaps even more loving. When Leo was doing his time in the hospital this summer, I remember the terrible disconnect of not being able to hold him, to hug him close, and feel his little body snuggled in tight to mine. And when I finally got to pick him up, five days after the surgery, it was a very stressful and visceral experience. Stressful, because in addition to trailing wires like some kind of robotic jellyfish, he still had the central line in his neck so any movement that jostled it was painful for him. Visceral, because I had this unstoppable momma bear feeling that if only I could hold him and rock him like I always do, it will make everyth

It's that most wonderful time of the year! The time when society tries to ramp up its consumerism with shameless advertisement, and Christmas becomes nothing but a sad, empty wallet. That iWant was what pushed everything into the red. The new and improved iWant promises many things; Your heart's desire firstly, and secondly, something essential for the betterment of your life. We need that iWant! We can't be happy without it. Every Christmas I think about my children.  Maybe because with both of them, I found out about the pregnancies around Christmas. And so I understood why I was so weepy during the beautiful parts of the church service where we sing about that most precious gift that was given to us. Our salvation in the form of a little baby. The iWant, although it tries hard, really can't compare. Because the gift of Christmas is not about self fulfillment or happiness, it's about the ever lasting joy of sacrifice and love. In many ways, when Leo was

I think this little clip speaks for itself, don't you? If this doesn't give you a chuckle, then nothing will... On another note, our Brother Bear met with his neurologist this week, during which, some of the seizure myths were demystified for us. The most important thing that we learned was actually something that helped to alleviate our worries! For a change... Anyway he told us that the freaky seizure that landed us in the ER is actually a preferred type of seizure for people who suffer from epilepsy. Technically it was a partial seizure that only affected his arm and leg and didn't inhibit his responsiveness or any other thing. He went on to say that people can have this type of seizure for years without any damage to the brain. But even for this kind of a seizure, an hour, is one hour way to long. Next time, and I pray every night that there will not be a next time, we need to give him the diastat right away, and then take him into the ER. The longer the seizure g

If there is a will... Leo will find the way! Every week, every day, and every hour, his brain is learning, growing and developing. So is his body. It's so awesome to watch. Recent skills of his include totally mastering sitting. He sits independently and is able to rotate his torso all over the place and keep his balance. Today at church the real test came when his loving sister dropped a pillow on his head and he didn't move a muscle, other then those he uses to laugh hysterically with, that is. Yeah, he's a tough dude, and on top of that he is into slapstick humor big time. Can't wait to watch my favorite Chaplin films with him! Other nifty things he has learned lately is to throw stuff, dump stuff out, and roll stuff across the floor. And all the stuff eventually ends up doing time in Leo's mouth. He's teething again, 'nuff said! Another skill is being better and stronger at standing. He spends a couple hours a day on his feet, whether it be in his

It's no coincidence that Thanksgiving takes place towards the end of one of the most difficult months of the year. And if you don't think so, then you definitely don't live in the northeast. Here, November is usually grey and drab: the strange place when the trees are bare and colorless, and the ground is frozen but not yet blanketed in a muffling robe of white snow. Known as the most sunless month, November is when the reality of a long cold winter starts to set in for keeps. Last November was pretty brutal for us. Between fighting seasonal viruses and depression from lack of sunlight, we were also gripped by the fears surrounding Leo's future, or lack thereof at the time. It was a bleak time and finding something to be thankful for was next to impossible. This year, it's easier to be thankful. But I still somehow manage to find my way into the classroom that belongs to the School of Hard Knocks. Once you have been accepted there, you are there for a good chunk

Eyes: so essential, so precious, and so taken for granted. They are the "windows to your soul," and can express a plethora of emotion and feeling, in addition to the essential function of relating and translating the world in which we move. Eyes are the instruments of our perception, the gauge for our knowledge and the judge of our insights. The thought of losing that precious ability is one that is so horrifying to me, as an artist, that my lizard brain doesn't even dare to feature that even in a nightmare. My mind just doesn't go there . So that's why I'm calling docs and dragging Leo to appointments because there is no way that I will let him lose that gift. I mentioned previously that he was diagnosed with something called Bilateral Six Nerve Palsy. I actually have no idea what this really means, other then what wikipedia tells me . Unfortunately, rather then the straightforward case of simple cross eyes, which is a pretty easy fix, this is someth

 We are all acquainted with the right brain, left brain terminology. Like we all know that all those doctors and lawyers and other success savvy folks are left brained, and that all the artsy fartsy, and "creative," or in other words, broke, people are using mostly their right brain. Well, a couple days ago, I was introduced to a theory that turned all the other right brain/left brain stuff on to its head. This theory, oddly enough (or not, because it's me after all), starts with horses. I know, here some of you who know me well enough to have sat through hours of horse talk, will roll your eyes and scroll down to see the pictures. The rest of you? You might as well read the post. Who knows, maybe it will spark a horsey interest, or at least some new trivia facts. To start, the brain has many sections and parts that work together and independently to keep us up and running, but to simplify the anatomy here, our cortex is divided into two hemispheres. They are connect

Or something like that. I've been a little bit behind on posting up recent vids of the little lion man, so here are a couple in one go. Since the filming of these, he has progressed to saying mama pretty clearly and also meow when we prompt with "where's kitty," and many other sounds that could almost be words in Russian. It only stands to reason that the baby that was thought to be a non-responsive vegetable will be bi-lingual. That's our Leo for ya! Oh yeah, since this vid, his nickname for Nika is pretty much always: "Ahhh!?!"

Aren't there just a whole lot of wonderful adjectives in the thesarus for "determined?" When in doubt, learn new words...especially words that send strength shivering down through your body! And though we might be shivering around here lately with winter popping its shaggy head out around the corner and sticking out its tongue at us, however, we are ready for it. This year, winter won't get me down. (Big words eh?) Anyway I am determined, undaunted, and resolved that this coming new year will only hold good things for us. At least I am tenacious enough to block out any other thoughts from my head. Although the odds have always been against us, we do seem to strike the jack-pot in anything Leo related. For instance: This week as things steadily got more frozen outside, our little house has been warmed up by Leo's light speed progress. He is sitting unsupported for long periods and if he does fall over, it's only because he felt like it, or someone happene

I realized the other day, in a conversation with a friend, that not everyone has followed Leo's changing, sometimes confusing and baffling, but always astounding development through out his life so far. And by development, I guess I mean his story; the heart of the matter, or hows, whys, whens of the story. So in summation, here is exactly, though briefly, what happened a year ago. When Nika turned three, we decided that we missed having a baby around the house, and decided to do something about it. We found out about the new baby on Christmas 2009. It was one of the best Christmas presents ever. After a couple harrowing weeks of feeling like the dog's nappy chew toy, I started feeling better and life was blooming. Not so with the weather. For all my complaining about winter, the unpredictable snows actually saved us a lot of grief. I never made it to my 20 week ultrasound because of a storm, and then never got around to rescheduling it. The babe in my belly was happy, and so

You know what I love? I love those moments when something that I've been struggling with; a problem or an idea that isn't quite right, and then suddenly, usually when I am thinking about something totally different days later, the right answer will plop into my brain like a cheerfully bouncing Jell-O. Or maybe it's like that phenomenon when you find those lost keys only after you have turned the whole house upside down, accused everyone around you, and had new ones made. So in the middle of all this seizure trauma with Leo, when our minds have been far from it, Leo has learned to sit up and say "mama." Forget the keys, this is more like finding your wallet that you lost years ago and seeing that the driver's license pic of you at 17 wasn't as bad as you thought, and that the hundred dollar bill in there is in pristine condition. Even though all his therapists encouraged us into thinking that there is no reason why he won't reach those milestones,

Saturday evening we ended up in the hospital. I went to get Leo up from his nap and though he smiled at me when he saw me, I still freaked out. The left side of his body was jerking uncontrollably. I grabbed him, and tried to will the seizure to stop, but it wasn't stopping. Within five minutes we were headed to the ER. Even though they had given us an emergency diastat kit way back when Leo first started having seizures I decided to not even fiddle with it, since the dose was meant for a smaller baby. As it turned out, they had to give him two doses of Ativan through an IV to get the seizure to stop. At that point, it had been going on for an hour. When it finally stopped, Leo just tuned out. He fell asleep and managed to stay asleep through an X-Ray of his shunt, and another quickbrain MRI. Because the seizure was so long, he lost control over his left arm for an hour, which we were told can happen in these circumstances. Finally we heard back that his shunt is working perfectl

I knew there was a reason that I spent all that time and money on art school. I just knew it would pay off. Eventually. Somehow or other. In very small yet very significant ways? Well regardless of practicality or not, having an artistically trained eye isn't such a bad thing. Like when you try to formulate and understand things like the sizes of body parts. Take for example proportions: the classical proportion head to toe ratio calls for at least seven heads to make up a body, or depending on which time period perhaps even nine or ten. Heck, in barbie's freakishly abnormal body you can measure at least twelve heads! (If not more, but who really has the time to sit around and figure out barbie's proportions? Not me!) Ahem.. As you can imagine, a baby's proportions is very different from an adult. In addition to having spindly little arms like a t-rex, they are born with huge heads. At least in comparison to an adult ratio. So you can only imagine what the rati

Have you ever wondered why we humans always need to know the reasons for things? The whys and the hows of everything around us is essential for our brains to function. The moment anything out of the ordinary happens, what is the first thing that we do? We come up with an explanation. Once we have done that, then we feel relieved. Whew! Now that we know, or think that we know, we can continue on with life. Take for example, the things that moms and dads were told thirty years ago about their children with spina bifida. Doctors faced with shattered parents demanding answers probably pulled out the first thing that entered their collective heads. "Well, it was probably a bad potato." Umm, really? A freaking potato caused my baby's spine malformation? Unfortunately not everyone is blessed with such a skeptical mind as mine, and many mothers blamed their potato gratins for all their child's woes. This was thirty plus years ago and since then the medical community has ruled

Ever have those days when you feel lucky? So lucky in fact, that it's almost like you drank a lucky potion. Maybe not something as potent as Potter's Felix Felicis potion, but some kind of brew that makes your happy gauge go up and up. It doesn't just happen in books you know. Sometimes it isn't something that you did; it has something to do with who you are with. Perhaps it's just being around a lucky kinda person who gives off second-hand luck. I always thought I was the more unlucky kind. Never won raffles or contests, or even the better party favors. So when I look at the little son that God decided to give us, I feel my lucky gauge shoot through the roof. He was just born lucky. The fact that he was born at all is luck. Luck mixed in with lots and lots of faith. Perhaps luck and faith are one in the same, but whatever it was and is that gives our Leo man his magic, it rubs off on the rest of us. I don't think that the luck extends to a lottery ticket howeve

For one half of the parents and children of this world, development and hitting milestones is no big deal. Heck, I even know some parents who gripe about their kids reaching milestones, because, gee now they have to work harder at baby-proofing or keeping their kid from doing something crazy. Like plunging down the stairs on to their heads. Or I have heard folks say: I don't know why I was in such a hurry to get so and so to start talking, now I can't get the squirt to shut up! A year ago, I too was such a parent. And now I want to take the time to apologize to all the special needs parents that I now have the privilege to know, and say, that my only excuse is that I was a total ignoramus with no clue about life. There, now that that's out of the way, I want to tell all you parents of neuro-typical kids to stop your griping. Are you nuts? Holding your kid BACK? Now that is a concept that just doesn't compute with me. If your baby can crawl, help him walk. If he can wal

Today Leo had another quickbrain MRI scan and a follow up meeting with his surgical team. The neurosurgeon and the plastic surgeon were super excited to see how Leo's head, (and the rest of him too) have developed and changed. This time Justin got to climb into the MRI machine and hold his head still while the infernal machine clanked and fog horned around them. I could hear Leo shrieking all the way down the hall. Can't say I blame him! Anyway he calmed down pretty quick once it was all over and he got his toy and paci back. I hope that some day he will get used to it, since I imagine he will be climbing into MRI units for the rest of his life. Even though we, as always, get butterflies and sweaty palms when we do this whole routine because of our (slight) PTSD, his docs came into the room beaming. We knew the boy was doing great, and now the slides prove it! The fluid under the skin is 100% gone and the small pockets inside his brain haven't changed since the last scan,

The swelling is gone. Within a couple days, the waters under Leo man's scalp have gone! What a biazare thing. Just like the mad rivers that flooded our little towns after Irene receded in a matter of a day, so the same with little dude. We spent today coming up with adjectives to describe his "new" head. Not a cone head or tower head anymore, but more like a square head? Sponge Bud Square Head! It's very interesting to see now what they managed to change, and what stayed the same. Like his funky cowlick on the back top part of his head. Don't think I would have lost sleep over that being gone... In any case, it is a HUGE improvement over what his head used to be like. Wow! Although it still takes a conscious effort on my part to take off his hats in public. I think I can I think I can! Leo himself is definitely feeling the freedom of the relieved weight. He can now hold his head on his own, with very minimal support on his trunk while sitting up, and even stan