Monday, 4 August 2014

This place is New.

I'm sat in what is still a new house, empty save for me and a few wayward silverfish. Lulled by the hum of a cooker hood watching over a pot of lentils that doesn't want to finish boiling, a small fan creaking cool air across a still-unfamiliar living room, a humming dehumidifier blotting the moisture out of the air. When I wonder if it's working, it deposits a slurpy dribbly splashy thing into the reservoir and I remember that sound from our old leaky kitchen tap. Before we left that place and all it's black memories in the past.

This place is new. This life is new. We are new, fresh, beginning again.

Nine days to 2-1/2. A lifetime from that Birth Day. A world away from how can we do this? and slap bang in the midst of HERE'S how we do this. We are always on the verge: of succeeding, of learning, of doing, and with each trip out and into the rest of the world, Rukai succeeds. Rukai learns. Rukai does.

This place is new.

New life has bloomed out of big noise. And my God, life has been loud. Deafening. Life has been, for all intents and purposes, borderline unbearable. These past few months had us all teetering on the precipice of this-could-go-either-way-so-close-your-eyes-jump-and-hope-for-the-best. We held each other and jumped. And here we are flying again.

This place is new.

I cannot speak for my husband- nor have I ever-but I have reached this place by shedding nearly all of the old one. That place was like a frozen cocoon, like the Iron Mask in that Leo DiCaprio film. He wore the damn thing so long he grew to love it. And then it was peeled back and clamped on to the rightful wearer and he was free and he no longer needed the mask.

I call that mask Denial. That mask is a dangerous piece of work - it fits and caresses and leads to false hopes. But I wore it. And then, here this butterfly comes out and it flies, and there are massive wings and there is realization and belief and reality.

This place is new.

Now, this Denial isn't that Rukai has Down's syndrome. It isn't that his development is delayed. It isn't anything that has anything directly to do with our son. This Denial has always been that 'The System' and 'Society' and everyone else 'Out There' will just let us live. Here. In The New.

But they won't. They won't and I hate it. I still hate it.

Hate? Why? (But this place is NEW.)

This place is new because I have come to accept it. I accept that it IS. I accept that it probably will not change.

But I do not have to back down and let it roll over us. Here in this new place, I have now learned how to Begin.

I have now learned that this life is not going to be our own, despite what we want and have tried to protect. There is a label.

I have now learned that this life will be full of intrusion and interference and forms and paperwork and people-who-think-they-know-our-son-better-than-we-do. There is a label.

I have now learned this, and I have come to accept it. I accept that there is a label.

But friends of the medical persuasion, of the education system, allow me to firmly invite you to understand that although there is a label, you are in no way, shape or form going to use it to box in our son when we have merely asked your help in ensuring he seeks his heights. The quicker you understand this, the better we'll get along.

Take your label. Place it in your book of boxes to tick. Set it down on the table and look Rukai in the eye. Look ME in the eye. Take your label, for your label may not take our son.

I spoke the other day to friends about the weight of 'extra'. Introduce special needs to the search for a nursery and it is no longer merely about 'can we afford it, what are the hours, is it good enough, will he be safe'. It is that, plus 'is mainstream the right decision, should we even consider special needs nursery, will he be allowed to mix with his peers, will it cost more because he needs more help, how much more help does he need, will they actually provide it, if it costs more can we get financial assistance, will his peers accept or bully him, at what point will he really start to fall behind, which forms do I have to fill out, where do I find the forms, are there really 48 pages on this form, who do we need to speak with, who will lead us astray?' In my heart of hearts, I fear for him, so much sometimes it renders me entirely unable to think about anything else. The worry is a personal Armageddon.

Rukai will be assessed and they will tell us things we don't want to hear. They will tell us things we don't want to hear because we have been tucked safely away in that place called Denial, where we have done a fine job of raising our son to develop at a pace called 'Rukai' and that development is just fine for us and for our expectations. But those people will demand they have a chance to push him harder, to make him catch up and lo and behold there we are again on that 'what is he catching up to?' choo choo.

Damn it, can't they just let him grow?
Can't they ask us what we THINK?
What we BELIEVE?
What we WANT?
For him? For our son?

Please if there is a higher power, let them ASK. Let them bloody ASK. Do not let them try to TAKE because this continues to not register in my allow list and things will go back south on the express train faster than you can say 'it's his life and you do not own him'.

We are in this new place, and we are yet to meet those people but it is looming. It is looming and I have never been so nervous to meet someone in my life. More so than getting on an airplane and flying 4000 miles to meet for the first time the man who would become my husband. More so than meeting Rukai himself on that cold February afternoon that should have been all Dream and those people tried to turn straight into Nightmare.

Sorry folks, we hung on to Dream. And you are no longer seated in the audience.

Because this place is new.

I have never been so nervous because I want so desperately for them to respect us as our son's parents, his caregivers. To work with us and agree the course, not to ignore our wishes and try to take ownership of our son's wellbeing. Assign a label and suddenly parents are no longer capable of making the right decisions for the health, wellbeing and protection of their own child? Ludicrous.

I no longer want to be constantly fighting off intrusion and patronization. I do not express such arrogance in my own work so I simply cannot fathom why others do. I want so desperately for them to understand that Rukai is a person and not a diagnosis. He is not a label, and we are not uninformed and unable to act in his best interests. The others whom we left behind could not register that no, they did NOT know better.

But this place is NEW.
This place is called HOPE.

We are bum shuffling and furniture cruising and stair climbing our way into tomorrow. We have stepped into our armor and raised our shields. We have sheathed our swords for now but believe you me, if invited we will do the necessary battle to protect our son. His right to be heard. His right to BE.

We have left the tick boxes behind.
Show us your promise.
Show us your partnership.
Show us your relevance.
Show us your support.
Show us your thoughts about tomorrow.
Open your ears.
Open your hearts.

Know him. Respect him.

He is Rukai.



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