Tuesday, 31 March 2015

Out like a lion.

Bluster and gust. Rain and splutter. Like me, this week has done nothing in whisper.

They say March arrives as lion and tiptoes away as lamb. Not in this life, friend, not in this one.

In this life, there are times I find myself with no words. Speechless at the wonder of what I've seen, felt, realized, done. There are times I have no words, and then they come, and they bubble and froth and boil over and rush forward as tsunami and then I am free of them, I am released. Usually this release is a black and oily thing. This is a why us? and a how come? and an oh no! and a my God! And there is a hugging of knees and a rocking and a wailing and a running away and a digging myself out, and a covering up my head and wishing the day away.

But oh no. Not today.

Today the wave is Joy.
Today the wave is Pride.
Today the wave is Progress.
Today the wave is I am. I can. I will.

Today the wave is I DID.

Today the wave is steps. Steps to. And steps fro. Without support, steps. With a laugh and a grin so wide it could embrace the world. With salty tears. With a room full of people who have seen it a million times, yet still gone silent, turned, focused on one little boy.


Red eyes. Lumped throats. Beat-skipping hearts.

Today the wave is love and friendship. TRUE friendship. Fist pumping the air friendship. Thankheavensyougotherewethoughtmaybeyouweren'tcoming friendship. Not contrived, organized, hoped for, but TRUE. Tomorrow friendship.

Last June we moved to a new place in the hopes that the wave would follow, would sweep away all the sticky sorrow that held us all back, would free us from the past. Last June we came here to find our tomorrow. Last June was the proverbial first day of the rest of our lives. The days that have piled on top of each other like sand in a castle that goes so high it blots the sunset. The wet kind of sand that sticks and does not falter. The days that tower. The days that lay a foundation. That castle fit for a king.

Of his own destiny.

No, son. No. No one here will deny you this as long as I have your back. And I have your back. I have never had anything like I have your back.

We are sailing. All together, sailing.

Because there really ARE no words for the place we are. In every aspect of life, this place has delivered what we need in bucket loads. Blustered and gusted. Cleared the cobwebs. Parted the clouds. Painted us blue skies again.

Today the wind has toppled bins.
Today the wind has lit up the motion sensored light onandoffandonandoff like a panting phantom.
Today the wind has blown away the guesswork and the statistical suspicion.
Today the wind has erased the 'he will need..., he will require..., he will not...'

Because today he WALKED. A few steps only but he WALKED.

Unsupported by a walker.
Unsupported by his mother's hands.
Unsupported by his father's hands.
Unsupported by his nursery key worker's hands.
Unsupported by a physio.
Unsupported by the naysayers.
Unsupported by the box-tickers.

Today he walked. And tomorrow he will keep walking.

He will bluster and gust and fly and roar. And he will keep walking.

On his terms, in his time, he will keep walking.

Sunday, 22 March 2015

On this Day of Days.

I posted this on my Facebook page yesterday and the warmth I was given in return from my wonderful friends astonished me and has lifted me like nothing else. My opinion may not be popular with everyone but it is what I believe, and belief can move mountains.

Just ask Rukai.

Today is World Down Syndrome Day. 3/21, which represents those magical 3 copies of the 21st chromosome which has made our lives slightly more complicated than the average bear. But worse? Are you joking? Thatwouldbeabigfatno.

Today I'm supposed to sing about inclusion, and provide people with information. To rally up awareness and talk about wearing odd socks as a means to open the conversation. This thing they call 'lots of socks' can be Googled. I'm not going to elaborate here.

What I will say is piffle and balderdash on the odd socks. I think the whole odd sock thing is flipping ridiculous. Although it is not the purpose behind it, I just won't pursue an avenue which allows people to compare Rukai to an odd sock. That the Shiny People don't comprehend this, I do not see. But I'm not shiny, I'm Chicago. I'm 43. I'm a realist. I'm not naive enough to hope people don't jump to negative knee jerk conclusions on the sock thing. They will. So we'll stick to our two matching socks around here.

So that said, on this Day of Days I have two things to 'sing' about...

I am most looking forward to drumming up awareness of the DS association here in the UK next weekend in the Vision Wild Run - getting muddy for my buddy. Not asking a soul for sponsorship. Just for friendship. Just for the knowledge that you all maybe have a different perspective about DS from all my harping on. That you all know my son is the bees knees and I wouldn't trade him for all the pizza in Chicago. That people with DS are people. They are not DS. That maybe you'd tell someone off if you heard them calling a person 'a Down Syndrome'. If you ever get to that place and have that chance, let me know how it went down. I will buy you dinner and think of you as a hero til my dying day.

That is how important it all is to me. That is why I harp on about it. That is why there is a hide button on FB. But if you're still with me, you are still with Rukai and that says more than a bunch of odd socks.

If you don't already know, I will share with you the fact that DS has a gargantuanly vast spectrum of affectation and lo and behold Rukai is holding his own. That magic number three is still not presenting insurmountable challenges for us in our lives.

But you know what is?

The terrible twos. Followed by the screamy threes. Toddlerhood trumps DS in this house. Lays it flat or sends it screaming. Toddlerhood. Just like you did it. Just like I did it.

We all bleed red no matter how many chromosomes float around in that blood. And on this Day of Days that is all I want you to be aware of.

Much love from us all, my friends xxx

MSN 21 March 2015