Sunday, 9 November 2014

Shiny happy people.

Finally witnessed Rukai serving himself half of his dinner tonight. That with a spoon. Scoop and eat. Still no major chunks of food in the spoon-to-mouth version of 'grub' but he held the damn spoon and served himself. It made me equally happy and sad all the same. Possibly more sad than happy. This is the wheel we are turning on, around, over.


You will not understand fully if you are not in our shoes but this was bloody enormous. Nearly three years old and it was only today we had this extraordinary gift. Nearly three. Thirty six months. Yes, many hit this milestone at six months. Now add on thirty and welcome to our world. Add on thirty and see why the ability to feed oneself is such an extraordinary gift.

Add on thirty and know why there are dark circles under my eyes. Add on thirty and know why I keep to myself, then release with words, then retreat again. Add on thirty and understand why I have started to run as a hobby. It is seriously fucking lonely here.

Thirty. Months.

It's a hard life, this one. And it pisses me off, but not really how you may think.

It pisses me off because there are people out there in a similar situation who will tell you that this life is NOT hard. That their kid is 'rocking that extra chromosome' or polishing it, telling everyone how wonderful it is, perpetuating the shiny, happy people myth.

Sorry (not sorry) but Down's Syndrome isn't wonderful. It's not shiny, it's delay. It's not happy (and bloody stop thinking it is) it's constant hard work. It is a going-on-three year old with no words. Nowhere near toilet trained. No solo standing. No solo walking. And Rukai is quite healthy as it happens. This is from the 'doing great' perspective.

Yes, you're with me now, right?

We are cruising. In every sense of the word. We'll get there whenever. MaƱana. Maybe. Maybe not. Jury's out.

And every time I want to just play with my son there is always a back story, a lesson, a challenge, a milestone to reach, some achievement I want to push him towards.

Goddamn it, I want to just play with my kid. Can I just play with my kid? Why can't I just play with my kid?

(Because he'll become more delayed. Because he'll fall farther behind. Because that would make you a shitty parent.)

The pressure is exorbitant. We aren't rocking anything here. Rock THIS.

There are bad days, and I'm writing this slap bang in the midst of one to remind myself, and anyone reading, and anyone shining and happy and singing Kumbaya that there are bad days and you cannot polish over them, you will be forced to ride them. You will not rock a goddamn thing. You will just about light yourself on fire with worry. You will have a proper shitty day, and then you will awaken in the next, maybe not so shitty. But you know this is a coaster, with loops and giant drops and g-forces to make your cheeks self-Botox.

Ride it. And rock. THIS.

The shiny happy people out there singing how wonderful it is to have a kid with Down's syndrome I'm afraid are really slightly in denial. Don't get me wrong, I wouldn't trade my son for the world. But if someone had a magic wand that took all the extra stress and worry and hard work and 'why-can't-I-just-play-with-my-son's' away, you're goddamn right I'd take that wand and wave it til at age 2 we had food you have to really CHEW. And with it, fork usage. And running, and talking til I couldn't stand to hear another fucking word. Talk to me, somebody please talk to me.

If your toddler talks your ear off, count your blessings, mate. Don't stop counting til you're walking them down the aisle.

Don't stop.
Wave that wand.
Oh? No wand?

But LOVE. Beyond imagination. Love.

It's fucking torment.

But take your blind oblivion and your shinyhappypeople joy and your 'rocking this' thing and keep it away from my ass. Because it's a hard life, this one. Don't kid yourself honey. H-A-R-D.

We had lunch with peers a few weeks ago. I agonized from the second the invite was issued as to whether we should bring the portable booster seat, to save having to seat Rukai in a high chair, on the other side of the table. A place and position that none, nix, nada, zero of them would be in. I said fuck it, he eats in a high chair, we'll use the high chair. We didn't bring the booster. And we may well have been on the other side of the goddamn planet. There were photos we were not included in. Joker me - in denial - left a jovial comment. Then the sad clown nearly drowned in floods of tears that night.

There always are floods of tears. I'm so tired of crying.

It's a hard life, this one.

Who doesn't want their child to mix and mingle? Mine joins in (-ish) but the others are light years beyond. The joy we are able to hold on to is of being sat in the ball pool at the local soft play, mixing with tots nearer in ability. They are likely under 2.

But age is just a number, right?

I am writing this BECAUSE I treasure and adore my son.
I am writing this precisely because I would move mountains for him. With a teaspoon and bloodied knuckles and scabby knees. All of them. Sagarmatha and her courtiers.


I am writing this because fluffing over the reality of the situation by saying how wonderful it all is, is a giant crock of shit and will serve him nothing.
I am writing this because I am honest to a fault.
Because that honesty has made me enemies.
Becuase that honesty has made me friends.

Because that honesty has MADE me.

Read into this what you will,
Judge as you may,
Know that I have no shame about my son.

Beyond my un-ending love, well past my pride, I have only worry. Gargantuan worry.
I have only sadness that he has to try ten times harder than an ordinary kid to do everything he does.

And still there he DOES. That spoon goes into mush and up to mouth and into mush and up to mouth and some splats on the floor and some goes into hair. Like any other kid learning to feed himself.

Like any kid learning to FEED HIMSELF. What a ridiculously hard thing for some human beings to do. If you do not live this, bear witness to this take a breath and put on my shoes and then fling them away because you won't be able to wear them for long.

It's a hard goddamn life, this one.

But still my Rukai DOES. He does, and he does and he does.

He blows my mind. I love him so much I can hardly breathe.

And there, he is not a shiny happy person. He is a boy with a temper. With a path, and a past and a present and a future. He is all too often a whiny, crabby miserable toddler when he doesn't get his way.

Mama's boy.

He is a stereotype slayer. He is not a condition and he is trying so freaking hard every day to learn, to try, to fly. My heart aches for him in every possible way. I wish I could take that struggle and put it in a box and send it out on the jet stream. But I cannot.

When I see him agonize over the inability to do something and then get up and try again, and again, and again. To require nothing from me other than to be beside him. Because he will push himself.

He is staggering up that fucking mountain and he is pushing himself. Show that pediatrician, that stupid nurse, that rude health visitor, all those people, show them that fire. Show them who he is, what he is capable of. Show them.

Yes, IS my place to prove those doctors wrong. That is precisely why I am not a shitty parent. And why he gets so livid when met with failure. He stands up. Like Tom Cruise's Hollywood Samurai who gets the stuffing knocked out of him in the rain and the mud he staggers up and up and up and keeps on fighting.

Like that horse, he keeps on running.

So I'll hand him a spoon. If he drops it I'll pick it up and give it back. Just like any other kid.

There will be more tears. But one day there will be words. And steps. And Iloveyoumama's.

Today that day feels light years away, like I'll be an old woman by the time it arrives.

But age is just a number.

Put it in the ground where the flowers grow, and rock THIS.

1 comment:

  1. Keep going, keep pushing, keep striving for your little guy. It's hard, it sucks, rewards are few and far between. You have it harder because your little guy requires more. So what if he doesn't hit stages when other kids do! He WILL hit them when he is ready. And you have everything you need right inside of you.....or you wouldn't have been picked to be his mom! You'll get the loveyoumama and when you do, because of how long you waited to hear it, it will be that much more sweeter. Hang in there. Americans are rooting for you!