Skip to main content


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 crosses to bear. Some are clear, the burdens engraved for all to see. Others burdens are hidden from view, yet they are not any lighter for being there. With a heavy load on your back it is hard to change direction, to be light on your feet, and every step feels like a stumble. How can you dance? But dancing is the only way to go over the shifting grounds of life, and swiftly must you move. There is no standing still, because then you are vulnerable to the reaching fingers of despair. 
I don't know how it happend. How it happend that we danced with Leo through so much, to end up in such a different place then we started. Looking back, the view is shocking. Soon Leo is to be transitioned from Early Intervention therapies to the school system's. As a three year old, he will be delayed, different, and with medical issues. "Special" doesn't really cover it. How to explain to others how "exceptional" he is? That every time he calls me "mama" I want to cry from joy? That every thing he does, is a gift and a miracle? How his "delays" mean nothing to me? The medical alert necklace he wears does nothing to describe how this boy can dance through pain and limitations. 
The cross he bears may be permanent, something to be lugged around for his whole life, but the harder he dances, the lighter it gets until it means nothing more than the color of his eyes or hair. You can't prepare for change, but you can practice the steps of the dance. Where there is life, there is hope for lightness; there is hope for change.


  1. every morning when I pray my intercessions, when I take the icon of Our Lord's face on the Holy Napkin, the first thing I do is give thanks for the miracle of Leo. ~~Claire

  2. He is such a special boy. I think most people if not all would rather some advanced notice when things come in our life that flip them upside down.

    the Lord is with us through it, but it is hard. sending my love.

  3. Your way with words, your heart on "paper", the way you summed up 2-1/2 yrs and reminded us all that to go through change works so much better when we are dancing. Dancing with Jesus, dancing with the angels, dancing in our souls when our bodies won't, sounds like a great way to lighten the step and the journey. Thanks for sharing your heart and the insights our Lord has given you - to encourage yourself and others. Blessings to all of you. Together you have danced, a line dance, a contra dance, a square dance, a ballroom dance.............. keep dancing. Don't forget how. Just keep in step with your lion - and the Lion of Judah !


Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…