Our Essential Sorrows

"Suffering passes; to have suffered, never passes. One could say the actual experience passes away, but to have gone through an experience, never passes away. We are made into other people through an experience once received; even if we forget about it later, even if consciously we are no longer aware of what happened to us once upon a time." -Met. Anthony Bloom

It's so easy to get caught up in the "infinite moment" of trauma, and forget that tired old bag of a cliche: time heals all. Because in my experience, it really doesn't heal anything. Time just gives us breathing room to grow in understanding and acceptance through whichever woe is upon us. 

Lately I've been seeing and hearing a lot about the specialness of hurt.
In the special needs world there is a general consensus of feeling misunderstood, ostracized, and in some cases, despised. These feelings often spur a rash of articles and writings around the Internet about the mistreatment and ignorance of those who have not suffered in the same ways as parents of special needs children do. I wonder many a time why this phenomenon sets my teeth on edge. I'm not even sure why it bothers me so, maybe because my personality is such that I hate discord in general and wish everyone would just get along, for crying out loud. But I'm also not ten anymore and my years of experience have taught me that humans enjoy feelings of entitlement and desire for their own needs to be met over others. It's no different in the special needs world. We hurt, and since no one "gets" it we lash out in our own misery. It bugs me. Yes we have sick kids who may need much more attention, yes we may spend more time in the medical world and perhaps toe the line more often between life and death, but does that make us entitled to more special treatment then other people? I don't think so. Everyone, everyone, and everyone carries their own cross of fear and sorrow.  If sometimes their load looks lighter from my perspective, I remind myself that I have become formed by my experiences into a different person, as are they. Having gone though a whole gamma array of traumas as the mother of a child like Leo (though I dare say he is one of a kind) I am not who I was before. My "mental status baseline" (look at the cool words I know now ha!) is on a different plane, different chart, in a different world. But that goes for EVERYBODY. Our sorrows make us who we are, but the good news is, we can steer our makeover in the direction we want. Like into the open turquoise waters instead of down a bottomless whirlpool. 

I'm totally in love with this driftwood sculpture, aren't you?

So my message to my special needs peeps is, everything will be ok and though it looks like so many other people are care-free, it's a false vision and a temptation to see it that way. Our experience at sorrow will never leave us, but shape us into steel worthy of battle. I know I've learned to the exact gps location in my soul of my every weakness, my tiniest fear, and with these coordinates, I trust that someday I will update the map of my soul without paying them any special attention whatsoever. 

To my non-special needs peeps (You are still special, just a different kind of special eh?) I want to reiterate the message of empathy. It's hard to see a person hurting; sometimes it even feels threatening, because in hard situations we immediately play the "if it were me" show in our heads. That can be pretty rough, I know, I've done that and it's hard to know what to do or say to the person hurting. At this point, I've heard it all, and can categorize according to the comment, the emotional state and personality of the person trying to "comfort" me. I speak from all of us when I say, don't "try." There are the folks who like to make you feel better by one-upping your pain with a story of their own sorrows. To me that makes me feel worse because now I have to try to comfort them back.

Then there are the folks who try to make light of a serious situation, awww don't worry, it'll work out for the best! Hmm to this I always think, wha? Yeah life is mysterious, but the situation is not to be made out like a necessary speed bump, either...

Then there are the people who are so threatened that they will talk about anything else, like the weather, instead of the sick child in front of them. Those are also the people that you won't even see until things have settled down.

Don't be tempted to come up with "wise words" because they probably will be something they've heard a million times and can't relate to anyway. If the suffering feel like getting updated on the inspirational quote of the day, they can do so at their own leisure. 

That's a lot of don't do so what can one do? Well from my perspective and experience, the best thing someone can do is a warm hug and a shared tear of understanding from a place where things cannot be made better. A place where no amount of denial or chocolate (though I'll listen to argument about that last one) will alleviate the sorrow and fear. And that it's ok to "not" be ok when your child is very ill. There isn't any way to make anything better, so I think, the best thing to do to help a suffering parent, is to just quietly be there for them, to listen, to hug, to pray, and most of all, to witness and affirm the sorrow of a truly hard situation. We don't know why certain sorrows fall on our particular shoulders and not those of our friends or neighbors, but the reality is that life is filled with them, and all we can do is try to weather the storms as best we can and help those around do the same. All those guys who came and sat with us those long hours in the PICU? Bless you! Seeing sick people and helping is an essential piece of the human puzzle. Bless you for knowing that there is no such thing as "giving space" to someone hurting. No one wants to be alone. 

When no one knew why Leo was filling up with fluid it was my darkest time so far, perhaps even worse then his early terminal diagnosis days because he was still so new and foreign to me. My life before him was still very present in my mind and though his death would have been monumentally horrible I somehow wasn't as scared as I was last month when I felt him slipping away from me. Because after three and half years of him being the daily focus for my everything I could not imagine nor comprehend a life without that. I am truly vulnerable and powerless in my love for my little lion boy.  But my love is no different then any mother for her child, special or otherwise. Every parent or husband and wife, or anyone who truly loved feels the vulnerability of having your heart walking around in someone else's soul. 

Taking the doctor's pony for a wild ride. 

Our experiences shape us and wether they are negative or positive doesn't really matter. The negative ones get more of the spotlight for sure, but the positive ones are just as powerful. The harder I deny that fact and cling to some ideal and illusionary memory of a better life, the more of real life am I denying myself. Our life with those who we love is what stays with us throughout the years. I don't need to rely on my faulty memory for a glimpse of the past to help understand myself, I am made from the past, and the present, and what I will be in the future only God knows. 

The top picture is the scans of Leo's chest. The top being the very first taken in the ER and the bottom the very last one after the new redo of his shunting. You can see in the top that his right lung is collapsed and his whole airway and heart is pushed into the left lung so that the only portion he was using to breathe with was the darkest area on his left side. 

The bottom scan you can see his lungs are inflated and back to normal!

His recovery is going great so far, therapies are ramping back up again and he's slowly but surely getting back all the strength and muscle that he lost through his illness. His new shunt seems to be working beautifully, his scars healing up, and his head is getting a nice layer of blond fuzz again!

He's also gotten really chatty. These days whenever I ask or show him something he either says "Oh yeah?" or "hmm.. cool." The boy knows he's the coolest lion on the block.