Leo Clement

A year unlike any other.. A collision of chance, a cacophony of probabilities, decisions and choices entwined with fate.  Roped and hobbled by necessity. I don't think that we are the only ones viewing the coming year with no little amount of trepidation. Raising a glass to it is a dubious pleasure at best. Once burnt twice shy they say. Perhaps they should change it to, once burnt twice shy, and three times desperate. Another saying that is spinning in my head tonight is about drinking the bitter cup. It's something my dad told me, way back when we first found out about Leo. That also fits right into another saying that we Orthodox Christians say daily in our prayers. We pray for God to deliver us and save us from necessity. When I was younger, (Single, childless..) I never got this. Bitter cup? Necessity? Whatever! As the years go by we learn about necessity, either we learn or we stagger from one catastrophe to another.. Necessity. Something that kills us to do, and kills us...

Today our sweet little bug is 4 months! It's so hard to believe that its been only/already 4 months. It feels like years passing in a blink of an eye. Very fast and very slow at the same time. What can I say but that he holds our hearts in a very special way. I love him. And you know, I really feel that it's a stronger love then what a mother has for a normal baby that is born to her. Usually, once you see your brand-new baby, you have no choice but to give your heart to this little creature that was and is a part of you. I remember that vividly from when Nika was born, as if the whole world zeroed in on her tiny face, and nothing else mattered. When Leo was born, he arrived on the crest of a wave bearing all kinds of pain, heartbreak and fear. Also drugs. The c-section was so rough and intense that they filled me with a medley of narcotics. I'm one of those folks who doesn't even take sudafed and here I was stuffed to the gills with chemicals. I was so loopy that even ...

I am referring to my inner state, my spiritual state, throughout this whole ordeal.  When fear grips us so profoundly it keeps us in a half-state of being.  There are no mountaintop experiences (real or imagined) and the temptation is to allow that fear to become the norm as life slips by like a dream.  Where once there were many roads "out" (real or imagined), fear, or the memory of fear says "don't rock the boat, you've been comfortable now in this new state of fear" and it binds you to the event like a boat that crashes against the rocky shore again and again and again whenever the "inner storm" rages.  This is my all-to-human spiritual state these days.  But it isn't spiritual at all, it's just a replay of the same event crashing on the same rocky shores.  I need the storm, the rocks, the whole scene to complete the cycle of fear in me.  It's how I "deal" with a situation that is beyond me.  Unfortunately it is how I have ...

And this is Lia, she's 4 months old. Awww how cute! Etc etc etc. This is all that is needed to introduce a normal baby. Her name and age makes her who she is. A "special needs" baby? The name and age comes last. First it's usually a list of incomprehensible medical terms. My baby was born with this and that and oh yes, his name is Leo. This has really been bothering me lately, that my son is defined by some ambiguous medical label that immediately alienates him from every normal reaction. It bothers, because to me, he is who he is. A sweet, happy baby that tries his hardest to make us proud. Not some kind of medical anomaly, or a statistic. He is unique and mysterious, just like any other infant just starting out in life. Lately we have been talking more and more about his diagnosis and the scans that they have taken of his head when he just a couple days old. It all seems like some kind of misty nightmare that lurks in the mind; strange and surreal. Did it really ha...

and so does our baby boy.  I was told this week not to give up on the blog.  It will serve as a documentation of how much our lives have changed with Leo.  Usually change is subtle.  By the time a season has passed, like this sleepy Fall, I cannot remember what I did on those many golden days.  Winter is here and I am in survival mode and wondering what it felt like to be free, warm, less heavy hearted.  But really I was on the edge for most of it.  Sometimes I would like to let people crawl into my space just to feel what it's like to never feel at peace about your son (or daughter).  Peace comes in degrees.  Nothing is taken lightly.  The fact that Leo is incredibly "alive", meaning, he feels this world, breaths it, fights it, and loves it, is a miracle.  Lately he has taken over our attention from our daughter who demands attention all the time (because she is so cute) but we can't take our eyes of our little boy wonder.  Hi...