Leo Clement

Parenting is such a trip isn't it you guys? There are so many overwhelming facts and issues that even the longest book on earth would still be too short. And that is for normal kids. Throw in a congenital disorder or two and you will have to start quantifying its measure in light years.  How can a mom's brain deal with all that data? So far the answer has been zealously guarded by moms across the globe, but I'm here to spill the beans...are you ready? The answer is: they can't. Brains with their almost limitless neuron firing capabilities, facts recall and computations, still suffers dramatically when compared to the unplumbed depths of the heart. This feels even more apropos to me because of the whole A.I. boom in technology; the blurring of lines between humans and machines, human flesh and robotic wires. What makes a human really human? Is it our grey matter? I know the little brain of metal and glass I carry in my pocket is a better brain than the one ...

It's been a while since I have blogged. Over a month in fact. Sometimes I just don't feel like writing. Sometimes I just don't have anything to write about. Sometimes I forget. And sometimes I don't write because I simply don't have the time. April was kinda like that. We Orthodox Christians celebrated Easter, or Pascha, a week later than most of the world this year. Sometimes our calendars coincide but when they don't it only serves to highlight that for one week out of the year, we truly are not of this world. With two church services a day culminating with an all-nighter in church we are transported to another plane; somewhere removed from our petty cares and struggles. I imagine the lack of sleep helps to really put you in that frame of mind too. We gave ourselves a couple of days to recover and then we went on another little journey. This time it was more of a physical nature than the spiritual journey of Holy Week and Pascha. A...

I think something that parents of special needs children learn very quickly is how to reject the "ideal." In fact, I believe we not only reject it, but completely remove it from the equation of our daily life. Before I became a parent, I remember being that annoying smart ass who had all these opinions and ideals as to what my kids would be like, and more importantly, how I would raise them. For example they would be perfect little angels, eat all their veggies and sleep through the night. Boy, was I out to lunch or what?  Then I actually had a kid and it was a real shocker to see all those pre-conceived opinions and ideals fly out the window along with the homemade baby food, organic diapers, and over priced baby carriers. I was suddenly faced with the fact that all my book reading on pregnancy and birth and newborns was totally useless when faced with MY actual pregnancy, MY actual birth experience, and most importantly, MY actual, larger than life, red-faced, colic...

Leo Clement, AKA: The Little Lion Man. So there is all this talk about Leo being so normal etcetera etcetera etcetera, but what does that even mean? Because for obvious reasons Leo is not normal, hello, remember his birth? The seven plus surgeries and numerous hospitalizations? The reason for this blog? Well yes. In his four year movie, ( re-watch it here, I know you want to. .) I try to stress the point, over and over, that Leo is his normal, that even though he is different from you or me, he is also at the same time, no different. I think I would believe this to be true even if he were more impaired; physically, mentally, medically, whatever, if in other words, he still wore the terminal label of hydranencephaly. In those first few grim months of Leo's life I joined every single support group out there for this condition, and to my astonishment (total newb), I learned that most of the parents and caregivers of such miracle children share this same sentiment. Eve...

Nope.  It's not my special needs kiddo who is the reluctant hero. It's not us, the parents. It's not the generous and compassionate friends, extended family, teachers, therapists or the doctors, though they all are heroes of course, but they are not the ones I'm thinking about today. It's not Batman. Today it's them.  The siblings of special needs kids. Most of us didn't sign up for the role of a special needs parent though the majority of us have embraced it whole heartedly and if pressed, will admit to not wanting it any other way if it means even loosing one atom of what makes our children who they are. Our other children though? The neuro-typical kids who are often left standing in the background: they are my reluctant and grudging heroes. We've all seen and read the articles showing those saintly sibs who do amazing feats for their disabled brothers or sisters. Wow, everyone remarks, how special that they are so generous an...

Night is when it seems like anything can happen. We humans as a diurnal species have a strange relationship with night. Sometimes we can sleep through it completely, rarely delving into the dark mystery which seems so available at times, and sometimes, we find it so alien and strange. If you are a parent of a young child(ren), then the night becomes a proving ground, much like a Roman colosseum for gladiators. Which night demon will challenge our mettle tonight? And will we be victorious? Unfortunately, as the dawn sun peeks through the window, it sometimes sees signs of failure. My husband will tell you that I turn into a "badger" at night. What he means by this is that I get really grouchy, irritable, and generally irrational, however a badger is actually a nocturnal animal, so the comparison isn't technically correct..but the sentiment is. He's right, at night all bets are off. It's no wonder that if something bad happens it always happens at night. Night ...