|An oldie but goodie|
When brainstorming ideas for a blog post, I always start with the impossible. Like a topic that really is way outside my scope; say something about the crazy sadness happening in Ukraine, or the ongoing heartbreak and tragedy of the middle east, to perhaps the political farce in our country and then, just as I sit down at the computer all fired up, cold hard reason sets in and I spend the next twenty minutes browsing FB and looking at all the pictures my friends post of their summer vacays. Cool right? So after exploring both sides of the blogging spectrum; from the way too ambitious - in your dreams post- to the I'm busily doing absolutely nothing post- I tend to drift into the happy medium post land which includes topics that I actually do know something about, and of course the old stand by: Leo.
This blog is his after all.
And believe it or not, well actually if you don't believe me the proof is just to the right on the screen in the form of a million or so archival posts dating back 8.23.10 that I have kept up as a faithful blogiary (diary?) of his almost four years on this earth and in our lives.
Almost four years of being subjected to a full immersion crash course on medical issues and special needs. Unfortunately, unlike most immersion courses where there is a real-live and usually certified instructor, in our class we just got the tests and hard assignments, but lacked the certified instructor part. It was a learn as you go thing. And it still is of course, though perhaps modestly and only on good days I like to think of myself at least at a bachelors level on the chart.
So ok, I know some stuff about this special needs thing.
I know about surviving scary situations.
I, sometimes, even know how to deal with my own anxiety about before mentioned scary situations.
But what I really need to brush up on, is my lamentable complacency with these facts.
As a special needs mum I would have to be living in the woods as a hermit to not be made aware of the special needs cliques and injustices.
I would have to be illiterate to not be made aware of the "super hero" special needs mothers. "OMG!" I've read and heard people say, "you are totally a super hero to do the things you do." Not only do people say this, but they actually spend time writing essays on the subject! (Like so totally different than what I'm doing now of course...)
I tell you truthfully, and pardon the language, this is a load of __ and please if you have ever said so, try to refrain from saying so again in the future. It is what I like to call a positive-negative. In other words, I'm going to mask this actually bitter and alienating sentence with a fluffy sugar topping.
Why is it ultimately negative? And no it's not just in my touchy head that it's negative, ask any other special needs parent how it makes them feel, and you will find that it basically means your child is such an incredible issue and problem, that you have to be a villain fighting super human to put up with it day after day after day. (Read a fellow mom's response post to this very same topic here! (Her post is cooler and funnier than mine, I admit...)
Ok granted, there are moments where I swear Leo briefly resembles the Green Goblin in toddler form, pointy teeth and everything, but I, and my stiff limbs will attest to it, ain't no Cat Woman. (Since when did sitting cross legs include a soundtrack of creaks and pops? I need to do more yoga. Yoga on horseback? That sounds more like my thing.)
Anyway my complacency comes in when I'm ok with being called a super mom. It comes in when I expect people to pale and get teary eyed when I just give them a run-down on the crazy happenings in my week. It comes in when I read articles like the ones floating about recently and say, "hell yeah, those typical peeps better pay some respect!"
And it goes on.
I get complacent with Leo's care, and with his achievements. I got those seizures in the bag! (At least I think so until the next one actually happens.) And... Leo can you pleeaze stop saying where is Mama for the hundredth time today?! I mean really kid, just because you weren't supposed to even be able to talk doesn't mean you should go overboard with it.
Complacency is a deadly thing.
It's deadly because it is usually is self-limiting like a virus, but unlike a virus when it is over you get better, here the complacency usually runs its course and ends up being replaced by something else, like terror, or anxiety and ultimately, a loss of confidence in myself and those around me.
Pride goeth before a fall, and complacency goeth before a crash.
I'm a complacent super special needs mom all the way until something happens with large proportions of stress and unknowns causing me to plummet to the bottom of my self confidence barrel.
Super mom no more. At least not until next week. Because by then I will have conveniently forgotten whatever it was that caused the crash in my complacency and I can go back to happily expecting people to treat me special. Because of Leo. Because I'm a super hero special needs mom. And basically a doctor, minus the actual MD part. Oh yeah and throw in gorgeous and witty while you're at it. (Just kidding on those last two. Keep the doctor part.)
Seriously though, the real kicker is I think I deserve my complacency. Because haven't I gone through enough? I ought to get some perks here!
But the reality is, the things that ultimately cause "a crash" are my perks. The crashes, the parts were I feel like I loose confidence, are the little tests that snap me out of complacency. The wake up calls, the kicks in the butts that make people go out and create masterpieces, invent, make differences in the world, save lives...
It's when complacency is rousted out by fire, and the people that take that fire and wield it, shape it, use it to grow bigger, and wiser, are the ones who escape getting consumed by it. The burning bush in the bible was a call to arms; a challenge of faith.
And sometimes the burning challenge is to actively accept what cannot be changed.
Fact: Leo is a special needs child, and that makes me a special needs mom. An average one at that. Or at least a typically normal special needs mom.
Fact: Take it or leave it.
The territory of the special needs isn't inclusive, because that is a double edged sword. We all, regardless of our status in life, need to learn the territory of others and "put it on" for everyone's sake. I think of this when I read the news featuring more horrors done by humans to each other. I think of this when I see a sick child, or even see what looks like a happy family on the outside, but who knows about their inner struggles? If we could only treat each other with humility, respecting whatever cross each of us carries, without comparing- without judgment or without the complacency that whispers to us, "don't change, don't think, don't act," how much better would we all be?
In the words of Metropolitan Anthony Bloom (who is totally awesome. If you don't know who he is, check him out HERE) : "We do not realize this because of course it is easy to see in each other and in ourselves how imperfect and what a distorted image we are, as though we saw one another and ourselves in a distorting mirror. You know this passage in the gospel, that if your eye is clear, you can see, but if it's not clear everything is distorted. Our sight is like one of those strange curved mirrors that gives a completely distorted, ridiculous, or frightening image of the person who stands in front of them. We must learn to see in ourselves the image of Christ and in others the image and it's very important to be able to learn to see it in our selves because if we cannot through the twilight, through the darkness, through the distortion, through the sinfulness, through the frailty, and through all the wrong that can be in us; if we are incapable of looking deeper then that and seeing in our selves the image, we will never be able to see it in others. Because the opacity is greater. There will be two opacities to pierce, our own, and that of the other. So when Christ says love your neighbor as your self, it's absolutely essential that we must learn to love ourselves in order to be able to love our neighbor. But to love ourselves doesn't mean to gratify all our whims or give way to all our desires, no, it means to look into ourselves and see this beauty which God sees in us, which has imprinted in us and rejoice in it, feed it, strengthen it, free it from fetters, give it full freedom and support it- and in this process discover the beauty of every other person."
I like to think that this is the kind of confidence that is good to have. Confidence in the fact that my life and my relations to others is free from distortion. That I can have trust during the crashes, and find a way to see them for what they are. A chance to show love. A chance to bring everyone I know into the realm of super hero, instead of just claiming it for myself. Super heroes are always too lonely you know?
So going back to what this post was supposed to be about, I propose that we find a way to see the super hero in every single person that we meet and turn that super hero statement into a double positive.
I can't allow myself to get complacent about my life, about my little lion man, because as the daily news shows us over and over that life is so fragile, so fleeting, so outside of our control that every day should mean something; should have value in purpose and most important of all, should have love for those in our lives and for those who we don't know but hear about in the news. We are all responsible for one another, and though I personally have no control over the monsters who are slaughtering children all over the world, I am responsible for how I think about them and how, consequently, I deal with the hardships in my own life.
And really the joys outweigh the hardships any given day. If only I had the eyes to see.