For several reasons the past couple of weeks I've been walking down the Leo memory lane.
The reasons are as follows:
A seemingly veritable baby boom happing here lately that fills the spaces around my friends with squishy baby cheeks and squirmy tots.
A heartbreaking situation with one of our friend's baby who was born with a very severe heart anomaly and who did not make it. Please remember baby Damian's family in your prayers. He was one of those special ones that touches and melts a multitude of hearts in his all too brief life.
And the last reason is Sloths.
Sloths? What the?
Crazy I know, but stick with me here, I'll get there eventually...
In the first year of Leo's life I had trouble being around typical, healthy, and well, basically normal babies and children. I had trouble looking at their perfectly formed little noggins without feeling a stab of pain in my heart.
I rarely took Leo anywhere, and when I did he was swathed in a turban like hat and tucked into a carseat carrier with the sun shade pulled all the way down. I felt ill when I thought I saw people looking at him.
When other one year olds were starting to get their chops, Leo was still flat on his back, his head serving as a giant anchor on his motor development and on my mental state.
When his neurosurgeon proposed a super invasive and risky surgery to re-shape his misshapen skull, I don't think even she knew how much the outcome would change all of our lives.
Witnessing our friends go through the trials of a baby with an uncertain future shot us back four years to those several dark weeks (months actually) after Leo's birth. I was reliving those horrifying moments in my memory when the world stopped and everything changed. Those days of uncertainty wether or not this would be the day; the day that he would die.
As we know it didn't happen then, though we only know it now, as in a post-event: post-hospice, post-DNR, post-months of waking up in the middle of night wondering if it had already happened while I slept. It was a dark time, as they say. It was dark and awful and all those things you can probably imagine, but it also wasn't terrible either. Weird huh?
Scrolling back through the dusty files of my picture folder, I see a lot of joy.
I remember feeling sadness, despair, and often, the feeling of being cheated out of happiness. I remember feeling like I've been wronged somehow, that all this couldn't possibly be happening to me. To my kid! It was all some giant mistake! And as if things weren't bad enough, I would have dreams in which Leo was running around, talking, and telling me how much he loved me! (Miracles of miracles, four years later, this dream has come true. Never loose hope people.) Then I would wake up and take my strange and alien baby to a doctor's appointment feeling that hopeful - afraid feeling that perhaps today they will say something good, but instead, there would be shaking of the head and amazement shown that he was still even alive. When you have a baby with a diagnosis like his was, it's a whole different ball game in the medical world. There are no stakes anymore, because once the "nothing we can do" sticker is stuck on, then the docs drop some kind of wall and their facade changes from "totally in charge of the checklist" to mildly "curious and sympathetic." Don't get me wrong, I admire Leo's doctors and after four years we've been through a lot with them, and they pretty much are some of my favorite people. But back then, when I was a totally heartbroken newbie, I couldn't help but feel despair after an appointment. But it's strange, that looking through the old photos, there isn't much evidence of that and instead I see picture after picture of Leo's early smiles, his piercing gaze, his perseverance, and I don't see any of that darkness that I remember feeling...
Just the wonder of life. Of Leo's life.
Imagine a little being who comes into this life who seems incompatible to it. He doesn't have the right tools, the proper makeup, or the physical abilities to live in this world. But here he is anyway, and live he does. What a conundrum, what a strange quandary!
His presence on the earth shatters any preconceived notions and befuddles the mind.
Enter the sloth.
(Ha! I bet you thought I was talking about Leo...Well you aren't totally wrong..)
A couple nights ago Justin and I were vegging on the couch, kinda bummed out thinking about our friends and their loss, and we ended up watching a nature program about sloths. Boy, were we blown away! I know right? Sloths! I thought I knew everything I wanted to know about sloths after that annoying kids movie Ice Age: that they are weird and stinky and talk funny.
During the whole program we kept glancing at each other in confusion and surprise because having known nothing about sloths previously, they somehow seemed awfully familiar. And then it hit us; they reminded us of our son.
Apparently when scientists first discovered the sloth they pronounced them unsuitable for survival and pretty much forgot about them. Because they are weird! They seem as if they come into life kind of handicapped. They can only eat leaves which have a very poor nutritional content, and they have a very hard time getting around on land. In the trees it's another story; they can move easily and almost gracefully, but again can only eat leaves so spend most of their time doing just that so they can get enough fuel to move on to the next branch.
Another thing that I was struck by is their perspective of the world. They usually hang upside down and are the only mammals that can move their head around like an owl. Though Leo can't do that, obviously, (that would be super freaky, hello Exorcist) but for the first 12 months of his life the world he saw was pretty much upside down.
It's interesting to note that the sloth skeleton is very similar to a primates when viewed upside down. However, the rest of him is very different. Their digestive system is actually more like a cow's in the way that they process food, but their metabolism matches closer to that of a reptile. It's all very odd. It's like the sloth is a combination of several different animals that all bump against each other in a strange fashion.
Sloth babies are almost impossible to raise away from their mothers. They usually spend almost ten months in direct contact with their moms at all times.
Yeah..well that similarity is a shoo-in, and at this point Leo has broken any and all sloth records because he has been attached to me for most of his four years. He's not getting that "the cord is cut" memo I keep sending his way.
|This pic was taken when he was one, but nothing has really changed, other than he doesn't wear hats made out of mylons anymore, and is a hundred times as big, and usually my smile is more of a grimace because the little dude is now not. so. little.|
And the last thing that really pulled on my heartstrings with these strange creatures was when they showed a video of them grounded. It looks like they got flattened by an anvil. You can feel the pull of gravity on their delicate bodies as they painstakingly creep across the ground. It almost hurts to watch them. It reminded me of when Leo was learning to crawl.
When he finally learned to crawl at almost two years old, is was incredible! His first really big milestone. One that we thought he would never be able to reach. And one that only happened because of the big, tough, and traumatic surgery we put him through. But it was worth it.
|This photo was taken just minutes before Leo was taken to the OR for his life changing surgery|
Watching our boy go through his life and totally defying common sense has been terrifying and exhilarating. (Picture sky diving.)
And though we always have compared him to a lion, I wonder if he also has the essence of sloth. Also since a sloth is such a hodgepodge of different animal characteristics anyway, it seems to stay in the theme.
The one last thing (I promise!) that I loved about them was that they seemed almost zen in their relationship to the world. Calm and submissive, they just take anything that happens to them with just a little smile on their face. Even flattened to the ground, whipped off their branches by humans, stolen from their families, forced out of their jungle homes, orphaned, whatever calamity that befell them, they just bowed their heads and took it. If that doesn't sound a little like a lion's heart I don't know what does. And it sounds a lot like our little human-lion-sloth baby.
With seven surgeries to his name, seizures, shunt failures, and a desperate and hopeless beginning, he has proven himself over and over that no matter what happens to him, he stays constant, stays true, and stays smiling!
So even though the world "sloth" has a negative connotation to it when applied to these mysterious creatures we should transpose it in our minds to something more along the lines of "spiritual" or "faithful."
Thanks for revisiting Leo's cutie pie baby pics since the sloth thing was basically an excuse to pull them out again. It's fun to look at history from an animal kingdom perspective sometimes. What animal do you or your kids hail from? Believe it or not, my husband has been known to compare me to a hyena on numerous occasions! (Grounds for divorce?) He should have played it safe and stuck with the unicorn. Because THAT is me all the way. Ha!