“We don’t see things as they are, we see them as we are.”
“The moment you take your first breath, your dying.”
It’s the all too common statement. “Live like you were dying” as the song goes, and as most people love to say. Sure. It sounds great. I mean, why not? But I don’t think too many people realize, just what they are saying. I know I never gave it much thought until I heard the above statement, words put in a different order to mean the same thing, put a new spin on the sentence.
Sure, it was meant well. Live like you were to die tomorrow. Leave no room for regrets. It sounds great. But I took offence to it. And its bothered me ever since.
Its taken me a long time to reach this point, and now that Im here, I would rather not have things disrupted because of a simple statement.
Years ago, I could care less if I opened my eyes the next morning, often going to bed, wishing, and hoping I wouldn’t live to see the light of day, and when the morning sun rose like it has every day of my 32 years – I would curse its existence. Wishing I weren’t there to see it.
When people say “Live like you were dying” I think what they assume is that you will do as that song says. Live it up. Party hard. Love with more passion. Take more chances. Hold no grudges. But really – to live like you were dying, I would assume, is nothing like that.
I often think about what I would do, if I had known. If I had known they weren’t going to make it to see another day. I wonder what I would do if when Emmy were born, I saw her with a ticking clock above her head. Constantly knowing that time was ticking down – and I knew when she would be gone. I don’t think it would be very pretty. Infact, I know it wouldn’t. Because when I was told she wouldn’t make it through the night I didn’t burst down the hospital walls to go sky diving. I didn’t run out and tell complete strangers I love them – I shook my head at the doctors words and told him to watch. That she would prove him wrong, and then I spent the next few hours telling her the same thing. I never said good bye. I didn’t say good bye, infact, until a few years later.
To get up each morning takes courage. Knowing. That it could be the last day, sure. But if I spend too much time thinking about it, life itself, would loose all meaning. I wouldn’t spend my time living, I would spend my time living – as if I were already dead. I wouldn’t try to better things, there would be no point. If I saw a ticking clock above the ones I love – I would see no point to continue. Knowing that they would be gone so soon. To say that one should live like they were dying, means something different to me than it does the average person.
I don’t WANT to live like I am dying. Because although it has taken me a long time to get to this point – I don’t WANT to die. I want to be here to see the kids grow up, and see where life takes them. I want to see whats around the corner. I don’t want to think about the looming possibility that they could be gone any second now. I already think about that enough. I don’t want to love them like they will be gone tomorrow – because that would be loving with limit. And I want to love them, freely. As they are. And not out of sympathy, or fear.
To live like you are dying; to think that you are dying from your first breath…
While I know the point is well meant, I think there are better ways to word it. Life is short. Its short enough as is without putting these unrealistic limits on things. And holding yourself to these morbid sayings. I for one, want to live like I am living. If you want to live like you are dying, then go to a hospital room, hold the one you love the most and beg, plead for them to come back. Knowing they are already gone, and there is nothing you can do. I don’t want to relieve those moments, and I certainly don’t want to live everyday like that.
I want to live with no regrets, and smile like I wont get to smile again. I want to love the ones I love, freely. And I want to get up in the morning, smile at the sun, and make up for lost time. And while I never thought I would get to the point where I would ever be able to say this again…I.
Want to live.
Instead of living like you were dying, why not live…like you were living?
Thanks to the recent cold spell here I decided that instead of turning the kids into icicles while waiting for the bus, that I would just drop them off. Because Madisons school is further than the rest, and because her school also starts later than the boys, her and I had a chunk of time. Where it was just her and I. I didn’t think much of it until she looked over and me and popped the question. The one we all dread, or atleast, I do. Even though I didn’t know I did.
“How do you know when you finally have…the right…one…” she sighed.
And I choked on my coffee.
Shes FOURTEEN. She shouldn’t be asking these things. Closer to fifteen, she so wisely pointed out when I tried to meet her question with a debate. As if it was debatable. I spent the next twenty minutes removing any doubt that she will come to me with any future questions. The conversation ended with me saying something about age, and her rolling her eyes and slamming the door.
I take that as a good sign. Atleast she heard what I said. Right?
But through out the day, I came back to our twenty minute conversation. Replaying it, pausing, repeating. Going over and over it, again and again. Asking myself different questions. Playing out different scenarios. Trying, to find some sort of an answer. Am I holding her back? Trying to keep her from something she will find, like it or not? Should I have offered her some words of advice instead of an argument? Sure, there are many different ways it could have, should have played out. And if I could have gone back and fixed things I probably would have only change the fact that I let her OUT OF THE TRUCK and OUT OF SIGHT after she asked such a question.
Honestly? I think shes too young to be questioning things like this. But its bound to happen, and I could have atleast given her some pointers. Like “Hey how about you wait until, oh I don’t know, you get your drivers license? Why yes, Madison, if you stop thinking about these things I will let you get your license. And a hundred and one dogs if I must.”
This is not how I pictured things. This life. These things.
Years ago, people would ask me “Wow. A girl. What are you going to do when she gets older?” At the time the only thing I could think of was “If we make it that long.” But I would usually answer the question with a smile, a nod of the head and a simple “We will cross the bridge when we get there.” But now? I don’t know what to do. I don’t know how to answer the questions. I don’t know how to tell her what I want her to know.
I want her to be happy, but I want her to be safe. And I want her to be smart. I want to keep her from more heartache that she doesn’t need. I want to keep her from giving her heart to some…boy…who will not handle it with care. I don’t want her to settle on anything less than she deserves. I don’t want her falling for the first person who tells her shes pretty, and I don’t want her thinking shes somehow less, because she didn’t get asked out by the person she hoped.
In short, I guess I want to bottle her up and set her on the shelf until these years have passed. Because I know shes not ready, and Im certainly not ready.
Shes smart. Shes pretty. And I don’t want her being taken advantage of. Because shes hoping for “The right one” to come in and sweep her off her feet only to drop her a few feet down the road. Because shes still young. Too young.
When she got home last night, I pulled her off to the side and told her I was sorry. I told her that I loved her, and only wanted what was best for her. And that if she wanted to talk about something I hoped she knew she could still come to me, and I wouldn’t promise, but I would try not to take her head off. She stared at me as if I had officially lost my mind.
“Earlier…” I said. “When you asked me how you would know if you had the one…”
She looked confused, and then burst into laughter.
And said something about finding the right “ONE” as in the right answer. For a problem she had already solved. That had something to do with her friends. And then she laughed again. And shook her head. And walked off. Laughing.
Which is good. Because I wasn’t ready for this.
Not yet.
Not now.
Not ever.
Last night for whatever the reason, was just one of those frustrating nights where nothing goes right. No one was happy, and nothing would come easy. As my luck would have it, I was tired and the kids were hyped up on something. In the midst of attempting to play the roll of the “Call and collect” person we all know Im not, I just tossed my hands in the air and walked off.
There was nothing else I could do besides loose my cool, and I was not going to do that. And so I walked away. Getting the kids to settle down was not going to happen. Getting Josh to calm down was DEFINITELY not happening, and I walked off, leaving the flailing mess of legs and arms on the couch where I didn’t want them to be, but right where they had decided to land. The “Limp noodle” was in full play and I could tell from his looks that he was simply toying with me. He wasn’t upset, wasn’t sad, or hurt. He was just playing. And I was going to ruin his moment because I was tired.
So I left.
I walked outside for a break. And to think of all the many ways life has changed. In a good way, for the most part. Things are good. Even though I am and have been reluctant to say those words. The words that imply I am happy – and life is sailing smooth for a while. Those words. That come back to haunt me every time I say them. Inside were three mostly happy kids. Who, aside from occasional sugar highs, and cabin fever are mostly good kids. Despite anything I may try and do to them.
When I walked back in, I didn’t hear the high pitch squeals one would expect to hear. Instead I heard laughter. The gut rippling laughter that comes from the deepest part of the stomach and shakes you whole body and everyone around. With occasional shrieks.
On the couch I saw a pair of legs. Kicking, violently. While on the floor Madison sat with Joshs head locked inbetween her arms. I couldn’t make out what she was saying, but every few seconds she would raise her free hand and Josh would shriek before she tickled him – resulting in the fits of laughter.
The moments I live for.
Being played out before my eyes.
Sure. They fight. They argue. Shes the only girl, and fights for her space, and her voice. While he does the same. Not because hes a girl, but because he has to yell louder to be heard sometimes. Hes little, shes big. Shes older, hes younger. The age gap between is seven years. And while that used to be the one thing that held their relationship together – it seems to be the driving wedge between the two of them. Shes off to bigger, better, and brighter. Shes expanding her view, and stepping off into the world of the unknown. And hes struggling to make friends. He adores them. You can see it is his eyes, they way he watches, and mimics. He waits, and runs, and tries to keep up. But often falls short. He wants their attention, but sometimes just doesn’t measure up to their adventures. And that’s ok. I don’t expect them to wait on him hand and foot.
They love him, he knows it. I know it. It’s the unspoken bond between a sibling that isn’t a sibling.
And there on the floor, between fits of giggles and laughter…
Lay the very reason of my existence. My happiness. My reason. My “Why.”
As if I had asked for a sign, a reason. A “Why am I doing this again?” question…my answer came. This. This is why. This is why I fought so hard to get them back. This is why I wanted to keep them together, when I KNOW there is better out there, and more that I cant give. THIS. Is something that cant be bought. And cant be taught. Its something that just is. And its something that when the days get tough, and the doubt far outweighs any logic or reason…reminds me. It reminds me that this is why. This is it. They have each other.
This isn’t a fairy tale with happy endings and butterflies. The moment was short lived and came to an abrupt halt when someone’s foot met someone’s nose. But in those few moments…I was reminded of what I needed to be. And given that little push, that extra shove…that quiet reminder.
Life isn’t perfect. But its good. And I don’t need perfect to be happy. I just need this. And a reminder every once and a while doesnt hurt either.
I didn’t want to get out of bed this morning. I would have preferred to shut the alarm off, pull the covers over my head and block the world out. I laid there a few minutes, and the decided I couldn’t. I couldn’t just lay there. Not now. Not today. I wasn’t going to be defeated. I had to get up. And I did. I showered, got coffee, and cracked the door open to the kids room.
Seven years ago, I would have never thought I would be where I am today. Living life without the little one who made everything livable. But living, with three awesome kids who make getting up and out of bed on those days when I would prefer not to, easier. And doable.
I went to work, smiled, laughed, and did what I was supposed to do. I did everything I do on any other day. I came home, woke the kids up, shuffled them through their routine, and took Josh to school.
Seven years ago, I would have never seen myself doing this. Living this life, that sometimes seems so foreign to me, Im not even sure if Its mine. Reluctant, to let go of what I know to be mine, and hold onto something I don’t know if will be there tomorrow or not. I didn’t take her to school this morning, I didn’t kiss her good morning. I didn’t even see her today. She isn’t here. And most years, its more than I can handle. Its hard, still. Knowing what I know today, and didn’t know then. But today. Its doable.
I got off work, stopped by the store, and came home. Where the dog ran circles and jumped and begged for attention. The kids came home, and the silent vow was broken. Orders were given, laughter was had, and tears were shed. Candy was distributed and consumed, dinner prepared, and laundry piled high.
Seven years. It seems like such a long time, yet it seems like a drop in the bucket. Compared to what still remains undone and unseen. Seven years ago I didn’t want to live to see a new morning. I didn’t want to say good-bye to another day without her. I didn’t want to see what the future held, or what else was out there. I wanted back. My thinking time consisted of something that would look like a lost person sitting on a lonely rock, staring into the past with their back to the future. My mind was closed to the possibilities of a NEW future. The fork in the road could kiss my back side because I was not making any decisions. And I was certainly not going to make it YEARS into this “new” life of mine.
Today I plan. I prepare. I think I wonder. I dream. I want to see tomorrow, I want to see next year. I want to see it all, and then some. I want to live to be three hundred, and still be able to move. I want to see the other side of the world, and I want to see the kids grow up. Kids. Who arent mine. But I love to pieces. And would be just as broken if anything were to ever happen to them. Kids. Who mean the world to me. Kids. Who make this life…life.
Seven years ago, I wouldn’t have thought that I would be taking these kids in, and loving them. Living. Loving. And laughing again. Seven years later.
I want to wake up tomorrow and breath in this life. This new future of mine. I want to see what is going to happen, and I want to get up and GO. And DO what I can in the time I have. I want to live again, I want to smile and laugh. I want to.
Sometimes, its hard. To have this new life, this new plan, this new future, and know that she isn’t a part of it. But its doable. Today, its doable. On a day I would never have thought to see the light, I see it. Bright and clear, just like I did yesterday. And the day before. Even when its clouded up, I know its there. And I want to see where it leads. I want to live this life with the ones I have and the ones I love, knowing. Knowing that I still can love her, and have her. And hold her close, if even just in my heart. Where she will always have that special place. Reserved for my little girl.
Who meant, and means the world to me.
And who I love and miss you, always and forever.
No matter what.
Signed,
- Your Dad
Wednesday will be seven years. Today, almost seven years ago. I didn’t say good bye. Because saying good bye just meant it was true. Confirming my fears. Accepting the truth.
It doesn’t surprise me, that seven years have gone. At times it seems like more. At times it seems like yesterday.
Today. Seven years. The only thing that surprises me, is that seven years later, I am still here. Still living. Not just going through the motions. Not just existing. But living. Breathing. Smiling. As if nothing happened. Me. The person who swore I couldn’t live a day without her, am here today. Almost seven years later.
In a way, I am shocked. Shocked that I AM still here. But not only here, but that I have returned to a place where I can honestly say I am ok. And I am still breathing. And not just grieving.
Everyday. Is a step further away. Something that scares me, but something I cant control. Every breath is a breath further away. Further away from the pain, but further away from her. Further away from the known, and closer to the unknown.
Today, as I think through the past seven years, I remember a day. Where I honestly didn’t know if I would make it another minute. The heart shatter pain that rain through my veins. I was left in a place. I felt like I was failing her, letting go. For a long time I had tried. Tried to “move” on. And “Let go” and it isn’t until recently that I realized something. It wasn’t UP to me when I let go. I couldn’t let go, because I wasn’t ready. I remember being in that place. Scared to let go, knowing I was. Somehow. But not knowing how. Loosing control. Fearing the future.
I remember it all, like it was yesterday.
But Im here.
Seven years later, smiling. Most days.
Because as much as it hurts, as hard as it is, as much as I hated to do it. I had to. I had to say good bye. I had to admit. I had to accept. Accept the pain, and the sadness. So I could heal. So I could not be left behind with the pain and anguish that came from loosing my daughter. But instead live today, and remember her. And love her. And hear her.
In saying good bye, I didn’t say good bye to her. I didn’t say good bye to the memories or the love. I didn’t say good bye to the pain. Or the sorrow. It wasn’t the magic cure. But I said good bye to all my perceived ideas of what I should be doing, and who I should be. I freed myself, from being left in a past that wasn’t worth staying in.
My biggest fear was leaving them. Loosing them. Forgetting them. And yet seven years later…As hard as it is to be here…without her…I still remember her. As clearly as I did then, if not clearer. Because my memories arent shadowed with fear of loosing her. Shes free, and Im free with her.
Ive held off saying this for a while, but only because Im not sure how to say it. And because I swing back and forth so often, that today I will think this way and tomorrow I will wonder who wrote it. The thing is, I don’t want to offend. I know everyone has different opinions, beliefs, thoughts, etc. But the one thing that seems to be among the most popular is that with autism, there is a lot of grieving. I heard someone say the other day that they often look at their child with sadness, and grief over what they COULD have been.
For whatever reason, it hit me wrong. I don’t grieve for what Josh could have been, he never would be that “person” that I would be grieving for. He is who he is, and who he always was supposed to be. If I have any grief over who he could have been, it is only because I have had these unrealistic dreams for him. Dreams that never were meant to be dreamt up for him.
This isn’t to say I don’t get sad sometimes, or upset. Or frustrated. With what he faces. This isn’t to say I don’t wonder how his life would be if he didn’t struggle with the things he does, but I also have to remember – that if he didn’t. If he didn’t have autism, if he didn’t struggle with certain things. He wouldn’t be Josh. He wouldn’t be the kid we all love. He would be someone else, and sure, we would still love him if that’s who he would have been, but autism doesn’t change my view of who he is. I don’t grieve over what could have been, because I still have him. Hes still here. I can still wrap my arms around him, I can still run my fingers through his hair, and watch him sleep. Hes still here. There is NOTHING to grieve over.
Except maybe the loss that other people see, when they see him.
They have a perceived view of who he is. Even though they don’t know him. They hear the word “Autism” and place their ideas of who he is on him. They limit him. They hold him back. They don’t let him expand because they don’t think he can. They see him as autism, they don’t see him as Josh. And that, is what I grieve over, if anything.
At first glance you couldn’t tell anything is “Out of the ordinary.” I don’t dress him up with flashing signs and labels to tip the world off of this. He walks through the world as a “Normal” seven year old boy until someone catches wind of the six letter word and then they act as if he has an unspeakable plague. The questions. The ideas. Everyone has their own idea of what autism looks like, and everyone is wrong. Autism looks like a normal child. Autism IS a normal child. Autism is the name of something that causes an ordinary child, or person, to struggle with certain things that others might not. But just as I wouldn’t poke fun at you if you had a visible disability, I would think you wouldn’t poke fun at him.
Just because someone doesn’t think the same way as you, or act the same way. Just because someone ISNT you doesn’t mean its wrong.
Josh IS A NORMAL child, but the minute you tell someone that they come right back with “Oh but I thought…” Oh but you thought. Let me tell you something, YOU thought wrong. This kid has over come so much in his life, that I think he deserves just a little bit of slack. SO WHAT is what I say. SO WHAT if he doesn’t talk with his mouth, or use his words to tell you what he wants. Why arent you finding other ways to hear what he is saying? Why must he be like everyone else to be considered normal?
Why don’t his thoughts and feelings matter? Just because he cant express them the same way you or I might, doesn’t mean he doesn’t have them. And just because he doesn’t talk, doesn’t mean you cant understand him. He is a smart, funny, loving kid. Who has a stubborn streak that runs deep.
He has a sense of humor that comes out at the craziest times, and has a laugh that you cant help but laugh along with. He loves wheels, his bear, and has always had a weird fascination with cold peas. His favorite color is orange. And he doesn’t like being wet. In more than one way he is just like you and me. He laughs, he smiles, he runs. He plays.
But what isn’t just like you or me, is that he struggles. With everything he does. A simple trip to the store takes careful calculation. Dinner takes twice as long. And school takes him to his limit. It takes him hours to fall asleep at night, and he is always up bright and early. Everyday. Without fail. He doesn’t have a single friend that I know of, and struggles in social situations.
But I don’t grieve. For him. Or who he could have, should have been. He is who he should be. The only thing that makes me sad, is that people, myself included, cant see past the differences that makes him his unique self and see him for who he really is.
Today.
Right now.
I worry sometimes, that now, just when things have seemed to smooth over, that suddenly…life is going to pull the sheet out from under our feet and land us on the ground, gasping for air. Its how its always been. Right when life reaches its peek – there is always a downside. For a while now, I have worried that if life goes smoothly for too long, something will happen. And often times I am left stressed out and worried, waiting for something that never happens. I wonder if this will ever pass. I try, to enjoy the moment, and the day, and this life…but sometimes, its hard to enjoy something – while waiting for it to collapse like a tower of cards.
Trusting is not something that comes naturally to me. I don’t trust people, I don’t trust life, I don’t trust myself. Im not the glass is always half full kind of person. And with every turn of a door knob, or key or ring of a telephone – I am always wondering if this will be “The moment.” When in the midst of something, a laugh with the kids, a moment with just one of them, a day where things go well – I am always wondering. Will I look back on this moment and wish I had done more? Will this be one of those “Last moments?” And of course, what if. I know you cant go back and change things, but I can go forward. And change the present. So if I were looking back – what would I wish I could change. What would be the “What if” moment of today?
It gets tiresome. This life is so dang stressful sometimes, that when the good moments of life come, I would really like to enjoy them. But instead Im fighting them with everything in me. And sometimes…that seems so old. So overdone. So over said. So repeated. So…mundane.
With winter break, and the kids off school – I have left every morning, with them sleeping soundly, and returned everyday to them…not sleeping so soundly. Everyday when I get home, I shut the engine off, and sit for a split second before rushing off into life, part two. It seems sometimes that I am living two lives. The work life, and the home life. And somewhere in between is me, rushing madly back and forth trying to make peace with everything inside.
These kids.
This life.
Its not something I take lightly, and something I try not to take advantage of. I can get up from a fall. I can climb out from dark, deep holes. If faced with a challenge, I push forward with everything in me and hang on until the very end.
But it seems as though everything has come to a halt. Im not being forced to live, or get up in the morning. I get up every morning, and while I sometimes hit the snooze button – its not me wanting to disappear for the day. I go to work, and don’t go looking to hide and run from life. I come home, and don’t hesitate to rush into the madness that this world has handed me. I get upset, I don’t keep my cool, I get frustrated. But I don’t have to constantly pick myself up. I don’t have to force myself daily. And while that sounds nice – its somewhat concerning. Its new. Im not used to it.
Im not complaining, Im just trying. To be ok with this. To be ok…with things being…ok. Its not something Im used to. And while I am fighting it, I think in some small way, I am becoming ok with it. Being ok with not having to struggle to keep my head above water. To not have to fight to stay afloat. To not HAVE to grab at every single lifeline that comes my way. To exist. To smile. To open the door and have a rush of excitement as three kids who annoy and frustrated me, rattle off what their hopes, dreams, and plans.
And while I hardly know if what I am doing is right, this. Today. Here. Now. Seems right.
It just seems right.
I love quotes. Seems like everything I want to say can just be summed up in a short sentence with the right quote. Except that lately, I havent been able to find the right quote, or words, to say what I want. Until tonight.
“Everybody knows how to raise children, except the people who have them.”
I found this quote to be funny. But funny in a funny way, and funny in a sad, very true sort of way. Everyone has the answers, it seems, except me. Everyone knows how to do what I am trying to do – only ten times better. And it seems no one has a problem telling me, daily, that something or another that I am doing, usually related to the kids, is wrong! I try, I do really, to take it with a smile. I don’t try and please as many people as I used to, but sometimes, on those days where I already feel like I am failing everything and everyone – I just don’t want to go out because I just don’t want to hear what I already know.
People assume, I guess, that I don’t know. But I do. I am so very aware that I screw up. Daily. I will be the first to admit that if these people closed their mouth long enough to hear me. I will agree with them. 110%. I fly blind, solo, and by the seat of my pants. I am doing the best I can, with the given circumstances and consider it great success when the kids are all in bed before midnight, having been fed and not hurt too badly.
That is when I collapse onto the chair and tell myself that we had a good day.
Because sometimes it doesn’t matter, at the end of the day.
It doesn’t matter that they didn’t get three vegetables. Doesn’t matter that I cant remember how long it has been since their last bath. It doesn’t matter that I rushed getting them into bed, and overlooked the sticky hands, or dirty face – because I really did not care. It doesn’t matter! In a few years (or minutes really) it will all be forgotten. And if something will be forgotten in a few minutes – then I don’t see why there is any need to fuss about it.
Pick your battles, and pick them wisely.
But not everyone sees it that way. And when the day is over, and the night is just getting broken in – I hear it. The critique. The criticism. The sarcasm. The sympathy for the kids. It plays back in my mind, and sometimes its enough to make me want to jerk the kids out of bed and have a 3 point session on how to get ready for bed. Because that will make me a better parent, wont it?
The thing is, for the past three years I have been trying to find my footing. Again and again I mess up, and I try to get back up, and move on. I am trying to find that balance of just where I belong in these kids lives. How much is too much, and when do I need to back up? It’s a tricky balancing act, and one that I have never claimed to be good at.
I try to play the roll of uncle, dad, mom, teacher, and friend. I try to be a cook, chauffeur, and referee. I try to fill the gaps, and teach them right from wrong. I try to give them well balanced meals, while teaching them to cook. When really – I need someone teaching me. I try to remember appointments, schedules, babysitters, and practice. I try but I forget a lot too. In-between work, and life – there is a lot that gets lost. Communication sucks. Patience doesn’t exist. And by the time the day has been in full swing for 12 hours – I am ready for a do-over. Even in the best conditions – I am no match for the game I have been given.
Yes. I fail.
If your looking to me to set the standard to do things – then look the other way, because I am not a good example of how things should be done. I am simply trying to get from one day to the next, with three kids in tow – and maybe if were lucky, a canned vegetable with dinner.
