Skip to main content

A Lion In Space

Once there was a deep dark nothing.

A nothing that was full; full of blackness, space, and of course, it was full of nothing. Then somehow, in some miraculous way, into that deep dark, a tiny spark was given. Birthed into the darkness, quietly, unannounced, and it grew slowly. But not that slowly. Soon the nothing wasn’t empty anymore. And the spark, it grew into a roaring flame, so bright that the nothingness resounded with its fullness and brightness. It was no longer empty. From the nothingness of the deep, the spark burned. It was not nothing. It was alive.

And it loved being alive. Thriving and growing the spark looked round at itself and saw that there was something wrong with his bright shape. Yes, he realized that he was a "he" and an "it" no longer. His heart was shaped like a lion, strong and fierce, but there was still something not right. He looked and watched and though he felt safe, he was afraid. The dark nothingness comforted him, and gave him faith. The deep taught him how to trust. How to trust in the darkness to show him the brightness. But it was hard.

Then came a day when everything changed, the full and tender darkness hid from him, and his lion's heart shook. He was assaulted with pain, with strangeness, and he cried. Then in the midst his lion's heart calmed, as he felt the presence, and the soft touch of love. Though it was all new, it reminded him of the nothingness that was everything. His heart stayed strong, and the wrongness in his body wasn't so wrong, as it was just there; a part of him, just like an over large ear, or a listing eye.

But it held him back. He knew that he couldn't run as fast as a lion should. And he wanted to. But to run, he had to go through a trial. It was scary and tested his very core, but he was strong, he always was and the deepness was with him. He survived it, healed from it, and though imperfect, he learned to run.

He knew that he was still different from others, weaker in his skills, but he had faith in the fierceness of his heart, and the hearts of those who loved him. And he had joy. He was alive, and he lived and found the strength to say no to fear, and most importantly, he saw that without the darkness, there would be no light. 

A year ago today, Leo was born. Not as we know his actual birth: that mystical passage from the maternal darkness into the light of the world that happened a year earlier, but his rebirth through the faith and skillful hands of two surgeons. Two surgeons and a whole lot of prayerful people, who took a risk and with it, made it possible for a lion to run.

It is the first anniversary of Leo's big fat huge cranial surgery, one that has never been done in this area, and only three others ever in the whole country. As I fill out the pre-op papers for his eye surgery which is coming up in a couple weeks, I can't help but think of this time last year and how much our lion has grown in strength and skill. How this time a year ago, we sat in the sun outside the hospital and prayed. We had no clue how intense and scary the recovery was going to be. We didn't know that he would hang on a thread while his wounded and changed body tried to cope and survive with his newly refashioned skull. But his lion's heart never failed him, or us. Nothing is actually always filled with something, I heard recently, and it awed me, and instead of making me believe in science, as was the intent of this knowledge, it affirmed that deep, loving all fulfilling presence of God. Who else could have held, nourished, and sustained our lion through life threatening hardship? And I know, because that nothing filled our hearts and gave us courage when we needed it the most. Even in my flawed way, I feel like in that darkest and scariest time of my life so far, I was given the gift of light, and in the darkness it burned the most fiercely.

Leo a couple hours after cranial surgery

A week later 

And Leo now, a year later in which he learned to sit up, crawl, cruise, say a couple words, and make signs, and also had another, more minor cranial surgery to bump out his forehead in Feb. 

Can't keep this lion down.


  1. And then a mighty roar
    Will start the sky
    To cryin'
    But not even light'ning
    Will be frightening my lion
    And with no fear inside
    No need to run
    No need to hide
    You're standing strong and tall
    You're the bravest of them all

    If on courage
    You must call
    Then just keep on tryin'
    And tryin'
    And tryin'
    You're a lion
    In your own way
    Be a lion

    Come on be a lion

    -The Wiz

  2. What a doll baby! He is so handsome and smart. Have been following his progress and am so impressed. I pray for the continuation of the great things that God is doing for Leo. I'm looking forward to the seeing and hearing of his next progression after surgery. I know that his little life is carved in the palm of our Lords' hand and your little lion will triumph once again!

  3. It's almost unbelievable how much Leo has changed in a year. Yes, as an outsider I would say he is thriving. Praying for a successful surgery.

  4. Catching up on some past blog posts. This one brought tears to my eyes, Anna - such a beautiful image of a baby being born, and of Leo's struggles. And what a testament to God's grace, to your own love, and to the little Lion's strength. Love you all!


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…