Leo Clement

You may have noticed that I've given this blog a bit of a face lift to start off the New Year, and I've also posted back up all of Leo's movies that I've made for him on his birthday. You can view them from the link on the home page's title bar. The very first movie I made for him is called the Half Year movie because we weren't sure that he would make it to the One Year movie mark! But he did and the Half Year movie become almost a catalyst for the miracle of the change in his terminal diagnosis. However, at the time of making that movie, I did not know the happy news yet so it was made with a dose of grief, along with the joy that we felt in having Leo in our life. The other movies mark his amazing development and progression after that first reconstructive surgery, but I'm sure you have also noticed that the Four Year movie is missing! When Leo turned four this past August we were up to our ears in the business of buying a house and moving, and then... l

Christmas on the PICU Shelf  Remember this time last year? Can you believe that it's been a year already? It's been a whole year since that terrifying two or three or t hree hundred weeks in the PICU . This time last year, we put up a tree just for the cat and the dog and christmas mice and the dust bunnies, because Christmas morning was just one morning in a parade of wretched mornings. My fellow bloggers are posting their pintrest quality christmases and traditions, decorations, and cookies; and all I can think about it is what Christmas is like when you are in the worst place a child could ever be. When Christmas Eve, instead of candlelight, warm hearths and toasty dinners, pretty much passes like any other PICU evening, with sickness and uncertainty. This year, I wanted to dive into everything Christmas. I wanted it to happen this year and not just happen, but happen big! Stockings, lights, tree, the works! I wasn't going to skimp on anything. I wasn't

Lets talk about the potty. Ok that's weird, you are saying to yourself,  she's really gone batty now.. What about the potty? Other than it being a cutsie thing that parents say when they actually mean toilet and bathroom that drives their friends without kids crazy, the potty is just that. Nothing more, nothing less... Usually...  The potty is a tool that pretty much defines, or it used to, way before smart phones and the internet, modern life. Think of Marcel Duchamp’s urinal "The Fountain." As thought provoking and cutting edge as that piece was (you could almost hear the scandalized artsy gasps echoing from coast to coast) and as many people who claimed they knew what the heck it was all about; in my mind it's just an echo of the modern times. Think it about, it's not rocket science. It's a toilet. Which is all well and good when you have one, and also know how to use it. Those who don't, well they all live in third world countries ri

I think if you were to ask me which holiday is the most meaningful, which one the most important to me personally, I would have to say Thanksgiving. Sure, Christmas is awesome, with the whole miracle of Christ's birth and our salvation bit, as is Easter for those reasons and then some, like the trampling down death by death thing. But if you were to ask me, which one I value and perhaps keenly feel the importance of the most, I would, hands down, every time, say Thanksgiving. I'll tell you why. (And I have in previous Thanksgiving posts so check the archives!) Thanksgiving was the holiday I hated the most that year when Leo was born. I figured I really had nothing to be thankful for. Nada, zilch, all the good things in my life were a big fat zero. When asked to participate in the round robin voicing of thanks around the festal table, I wanted to pretend to choke on my turkey and slide under the table. I also felt guilty for feeling that way, because let's face it

For several reasons the past couple of weeks I've been walking down the Leo memory lane. The reasons are as follows: A seemingly veritable baby boom happing here lately that fills the spaces around my friends with squishy baby cheeks and squirmy tots. A heartbreaking situation with one of our friend's baby who was born with a very severe heart anomaly and who did not make it. Please remember baby Damian's family in your prayers. He was one of those special ones that touches and melts a multitude of hearts in his all too brief life. And the last reason is Sloths.  Sloths? What the? Crazy I know, but stick with me here, I'll get there eventually... In the first year of Leo's life I had trouble being around typical, healthy, and well, basically normal babies and children. I had trouble looking at their perfectly formed little noggins without feeling a stab of pain in my heart.  I rarely took Leo anywhere, and when I did he was swathed in a turban li

 Once upon a time in a foreign land, there were well meaning parents who only wanted the best for their children. A neighbor had told them that a friend told her, who was told by her cousin, who knew from her relative, who in turn heard it said in the street during market day, that perhaps wearing cotton and planting cherry trees was the very best thing for children. By foreign land I don't really mean Russia, this is an allegorical story of course. And my parents were/are awesome so the other similarities to the cherries, the cotton, and the freaky foreign land are purely coincidental and for illustrative purposes only... don't ask about the cat. I have no idea about the cat. I wasn't a cool kid ok?  Indeed it wasn't just the best, it was what all smart and responsible parents did for their precious charges. So these parents got rid of and sold all their warm wool clothes, replacing everything with the much cheaper cotton. Then they dug up every well me

So.... It's time for your little Lion stats check-point post. Leo has now had almost two months of preschool, and things are getting better there.  He's gotten a good idea of the lay of the land at this point, and has even figured out which bits are his favorite. But it's not all roses and maracas, boy has to work quite a bit too. He's pretty much totally out of gas when the time comes for going home and he often dozes off in the fifteen minute car ride back from school. In addition to all the good-times school activities he also receives his therapy visits in the classroom. So far the team has been great about keeping me updated on his developing strengths and the ever persistent weaknesses.  At four years old, the little lion is walking leaps and bounds better than he was this time last year, but falls and trips are daily visitors. Some days he also seems more unsteady than others.  His vocab has also grown to include three wo

A picture is worth a thousand words. So instead of trying to explain with words what my local therapeutic riding program does, I've decided to show you. So that when I ask you to help keep this program going, you'll know that it's not another plea for a charity that you never see or hear about again. Many of the parents who I know with special kids think of therapeutic riding as essential for their kids as the more traditional speech or physical therapy is. Here is the summarizing statement from our program: "Therapeutic Riding works by involving the rider's body and mind to promote increased self-esteem and confidence, as well as to improve posture, balance, hand-eye coordination and muscle tone. Horseback riding gently and rhythmically moves the rider's body in a manner similar to a human gait, so riders with physical disabilities often show improvement in flexibility, balance, and muscular strength. For individuals with mental or emotional challenge