Leo Clement

I think that most of live in the "now." The "now" that is not only immediate, but also indefinite. I want things in the now to be good; feeling good in body and mind for me and my family, and I not only expect it, but assume without fail that this good will last forever. And then the same happens with the bad. When I or someone in the family is doing bad, it seems like it will now be the new norm that will last forever. How can I live with this stomach bug, I wail! It's impossible! I'm impatient because I believe the 'now" state of being is the one that will continue on. The irony is that I only pay attention to the now verses the all-the-time only when things are "bad." The reason for this thought process today, is that I am still (and probably forever, har har) trying to come to gripes with the reality of Leo's seizures. I do admit, however, that the seizures are just one of many categories of "bad" that parents (or rea...

So we have been walking down memory lane with some dear friends of ours the other day, one of which happens to be a doctor at Leo's hospital, remembering all the drama of Leo's birth and the following terminal prognosis. Our doc friend was not there at that time, almost three years ago, but she since then has seen Leo's file opened several times for ethics seminars, lectures, etc. It was fascinating for us to hear Leo's story from the clinical perspective. In some ways, we never knew it was that bad. Well, we knew it was, but ignorance of the fine details is bliss. We didn't even know about Hydrocephalus until we heard the word for the first time in the ultrasound room. For a while now, I have been feeling compassion for the doctors who were on Leo's case. I can't begin to fathom what it must be like, to make diagnosis like his. To be the decider and then the messenger of such news! A painful existence, an exhausting and traumatic experience for parents,...

Yesterday Leo man had to have his routine MRI and visit with his lovely neurosurgeon. The last couple times he was slid into the MRI tube he was either snowed under from a seizure or doped up to his eyeballs. This time, he was as fresh as a peach and as slippery as an eel. In other words, both Justin and I were just a teeny weeny bit unprepared for the fury that becomes Leo when he is faced with an MRI. Wow. I'm still recovering. And I wasn't even the one that sacrificed life and limb to go in the barrel with him to hold him down. That claim goes to poor Justin who may have toddler sneaker shaped bruises on his face for several more days... (Note to self: next time, take the sneakers off. Repeat, take the sneakers off...) It all started out innocently enough, with Leo enjoying his walk-about the hospital and even cheerfully donning the ridiculous johnies which in my humble opinion have seen one to many squirmy/squirty toddler bodies. Shouldn't...

Leo has this amazing and sometimes alarming tendency to bring out the best in people.  I'm not sure how he does it. He isn't that cute. But even a stranger at the grocery store, when faced head on with Leo, finds herself gushing googly-goo at him. Maybe because it doesn't take a genius to see that he is different, and perhaps that second take is what Leo works with. Because when they do glance at him again, he looks up from his one handed stagger (Leo's walk) across the floor and zings them with his baby blues. And at once they are kind; they say, "isn't he doing so well?" etc etc. It's as if suddenly they are experts in his development and want nothing else but give a cheering word.  Where does that stuff come from??  I guess little lion man has a face which tells a story that a brief glance may not even start to uncover. But at the second glance, which is at first, caused by something negative, (like his handicaps) quickly turns...

So here is the conundrum that has been baffling me for a while now. In the special needs world, there is this phenomenon of insanely fierce and possessive love that some parents have for their special children. It defies logic, physics, and sometimes even common sense. It is that head scratcher that makes doctors shrug in exasperation when parents refuse life support because of extra pain, or vice versa, keeping machines going long after all visible signs of life are gone. It is the soul shattering dilemma of abortion, it is the mother bear on steroids who bellows in fear and rage at a stranger. It is the mutant strength which defies physics and can lift cars and move mountains. But it is also a double edged sword which cuts the wielder as well. Our special children often call out this hurricane of love in us, which as often as it keeps them safe; focused in the eye of the storm, it nevertheless, throws and catches in its w...

Life is transition and how you handle it, is how you live. Fluidity through change comes hard to a lot of us, with me at the top of the list. I tend to require a lot of moving room and plenty of advance warning, at least with the big stuff. But that's not how it works. I envy those who seem to effortlessly move through one thing or another, without much pain or difficulty. Why is it so hard for me? To take things in stride, without fear, with acceptance, seems like it would take a personality of Herculean proportions, or at the least that of a saint.  I go through weeks of life without a thought of change, and then BAM change happens and I'm like: "whoa where did that come from?"  Like where did the last two and a half years go? How did it happen that Leo's life changed from certain death to hope to life to normal? I didn't see it coming and I didn't have the time or room to prepare. Since when is this normal? We all have our own cros...

Because now tis the season for hats, at least everyone who lives in cold snowy places like Vermont, I would like to dedicate a post to the many different hats that have graced our little Lion's mane. (Brace yourself for a photo barrage..) We all know that every newborn needs a hat. There are so many to choose from! From the hand-knit  slightly lopsided hat from grandma, to the fancy animal hat, to the humble hospital skull cap, the varieties are endless and fun. But if you have a baby like Leo, in addition to the fun part, the hat also becomes essential; a cover up, a safety net from the rest of the world. And a heck of a fitting challenge, at least in the beginning. Patens pending, of course, on the pants/shirts/tights hats... Here we have Leo's first hat, the flattering pants hat look. (Pants, as in, made from my natty pajama pants.)   Next we have the so stylish Shirt Hat..(also a very unflattering shirt in a previous life..) The Bat...