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"To the me of 18 years ago: Your beautiful boy has a secret. And it's going to break your heart."

To the me of 18 years ago.

You don’t know it yet but your beautiful baby boy has a secret. That secret is going to break your heart. Repeatedly. But I promise you, it will be okay. I promise. Sure you will need therapy, and a big bottle of Zoloft with that therapy. It will help, it will help you crawl out of that overwhelming fog you will feel for a while. But you won’t need them forever.

This baby boy is going to keep you up at night – literally and figuratively. You will worry over him like no other child has made you worry. I’ll be honest, you’ll never get over that worry and it will haunt you, but not constantly.

One by one you’re going to give up on the dreams you had for this baby boy. The ones of him in the playground, the sports field, the best friends, and what he could be as an adult.

"This child will help restore your faith in mankind again, and again, and again, just in the way people treat him." (Image: Supplied)
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The furthest ones will fade first. For a while you will live in the moment. Eventually you will allow yourself to think a couple of years ahead tops. Oh you will plan for his long term, but in the most of generic of ways, guardians, care plans and comfortable seating. You will even ponder the idea of a group home. But mostly, you don’t think of those things.

You just take it a few days at a time. It’s just easier that way. You will meet all sorts of people because of this child, and their true selves will be revealed. You’ll learn that some people are just assholes, some people mean well but should keep their mouths shut, and some people are kind, but most are clueless to what you’re going through. But you’ll learn that most people - at heart - are good.

This child will help restore your faith in mankind again, and again, and again, just in the way people treat him. You will spend the next eighteen years wondering how you ended up the parent of a special needs child. You kind of get used to it, but at the same time, you will never get used to it. It will be the feeling of constant surprise when you sit back and think about it. How the f**k did I get here? How the f**k did this happen? WHY WHY WHY ?

No, you will never quite get used to it, no matter how much you accept it. You will learn to be a fighter. You will find strength you never realised you had, and you will overcome your fear of confrontation. You need to do this because not doing this is not an option. That baby boy needs you to be this way. And you’re not about to let him down.

You will learn that those two amazing boys you had before him are even more amazing than you could imagine. They will show compassion and understanding beyond their years which will make you proud, you will cry just thinking about them.

But these two will have to put up with so much because of their little brother. Hours in waiting rooms, people staring, the best laid plans abandoned, and stuff broken by him. Your heart will break for them, that at a young age they will realise that they might someday inherit this brother.

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But once again, these boys - your boys - will amaze you, for they will never resent that little brother. Be annoyed by him? Sure, but in normal ways. The love they have for him will be so powerful, they will defend him with their last breath. Your little boy will teach his brothers lessons others will go an entire lifetime and never learn. It won’t be until later in their lives that they realise this.

Your little baby boy is going to work so very hard over the next eighteen years to learn things. Slowly, but surely, he will learn things. I promise you he will walk, he will get there. You will have to wait for over five years but it will happen. All that daily physio and OT will pay off. You will get frequent flyers points at the doctor’s office. You will collect cards of all sorts of medical professionals. You will be able to write things like “corpus callosum” and “macrocephaly” without thinking.

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You will also know that as much as you’re dealing with, you’re grateful that's all you're dealing with. Because there could be more, it could be worse.

special needs parent
"Your little baby boy is going to work so very hard over the next eighteen years to learn things." Image via iStock.

Your back is going to be in constant pain and spasm from carrying and lifting that child around so much. You’ll end up with tennis elbow from lifting him as an eighteen year old into the car. You will put on weight from stress eating. You will lose your mind a little. It WILL be okay. Your world will revolve around shit, yep shit. Your friends may think you talk about it too much. They have no idea just how much you could speak about it. Don’t worry some of your stories will be hysterical.

Your life is not going to go as you'd vaguely planned it. It’s going to veer off in a whole new direction. You will learn to view adults with special needs in a whole new light. You will feel very alone with this child. Sometimes, at home, at night, other times in the middle of a crowd. You will feel a cold wave of loneliness that you’re certain no one else will ever really understand. You will feel jealously, of other people and their children who are developing normally. Of their seemingly normal lives that don’t involve the endless phone calls and filling in forms and doctors visits and shit.

Just remember, you're not a whinger, you just get on with it. And you do. You will suck it up and deal with it the best you can. And you will do it all with a smile on your face. Because crying is never, ever an option. You will think you are superwoman and a very small few will ever see you when you’re broken. You will learn that the guy you chose to marry twenty four years before, he was a good choice. That man will be the one helping you pick up the pieces when you shatter, will love that baby boy as much as any other child and will take care of life when you can’t. Sometimes you will want to stab him in the eye with a fork, but he can always make you laugh. Not many relationships can survive this but yours will.

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It’s going to be a crazy emotional roller coaster, these next eighteen years. You’ll have moments where you’re feeling so high, only to crash back down. But know this, you will grow. You will amaze yourself. You will let go of fears. You will embrace the now. And you will love this amazing, beautiful little boy so much, it will hurt. And you will be okay, I promise.

Love Always me JMT xx

P.S. I am pretty sure you are Super Woman!

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