Tuesday, 23 February 2016

Pride of my pride. | #TransatlanticTuesdays

#TransatlanticTuesdays is a collaboration between me (in the UK) and Kera who blogs at The Special Reds (in the US) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.

Dear Kera

Would you believe three weeks on I'm still coughing? As if life hasn't got enough challenges for parents, let alone parents of kids with extra needs, then we go and get sick ourselves and have to try and spin that extra plate. A visit to a specialist - third doctor in this conga line - may have pulled me over the crest of the hill with the single word 'asthma' and another handful of medicine, that which I hope does the trick at long last. Cos 'ain't nobody got time for that'.

This month has been Rukai's birthday month and like all three years prior, I had great visions of making him feel extra special for the duration. Alas the poor boy has been trying to get me well. His empathy shines like my own personal north star. His heart glows through every pore. He is magnificent and I feel so let down I couldn't be amazing for him. So through trial and tribulation, test this medicine, try that treatment, remain unhealed, frustrated, sad, I've kept plodding on til I find what works. I won't stop til I get a result.

Kind of like Rukai.

Which brings me to your latest question: what has been the greatest challenge Rukai has faced thus far, and has he overcome it?

Well, I could go on at length at THE challenge, that which is society's propensity to underestimate and marginalize him but I'm not on peak form so I will stick with an easy one. Ok, not for him to DO per se, but for me to talk about.


Ye olde hypotonia has been my little superhero's bugbear. Of all the issues he faces physically and mentally due to his Down's syndrome, that low muscle tone is like kryptonite for him. His legs, like mine, are strong, quite short, but solid as a rock. Never an issue below the waist, but move up and that core has been like shackles.

He didn't sit up unaided til 10 months. He bum shuffled his way around thereafter, throwing in a very surprising commando crawl one day that had me and my mother in law's eyes pop out and spiral - like the country cousin in that Tom & Jerry cartoon upon seeing hot kitty singing 'Oh wolfie, oh wolfie, ain't you the one.'

Ain't we got fun?

T gloriously captured video the very first few times he stood himself up unaided. The joy on his face was technicolor, rippling into the stratosphere, cripes I may as well have had the Aurora Borealis stood in the middle of my living room. Rare and brief. So he stood up. He beamed, he shone, he wibble wobbled. Then he fell down laughing and he stood up again. Laughing more. Exploding into his 'what-can-I-do-now'-ness.

And he stood again.
And again.
And again. Like every child on every last corner of this big blue ball, he pushed himself to get it right til he got it right.

There has been no therapy. There has been only Rukai.

There has been practice. Just. Like. Every. Other. Kid. On. Earth.

Success after practice. Not so very different after all.

And then there came the day I walked into nursery to pick him up, and everything changed. 31st of March, 2015. That March which came out like a lion. Roaring. Echoing across canyons and foothills and fells and blustery mountains. Ricocheting into diagnosis rooms and piercing holes through steno pad tick boxes.

That lion's golden mane, surrounding the pride of my pride, roaring. Here I am! Watch me rise!

Our wonderful team at nursery had quite a surprise for me. I sauntered up. Another Tuesday, just glad to get my dude and bring him home.

But oh no, not today. Today they answered the door and told me 'he's been walking all day'! And here I'm thinking this walking was of that 'hold-my-hands-I'm-not-ready-to-go-it-alone' persuasion. So I stopped in the doorway. I'm facing the rest of the staff, smiling proudly while standing in a crescent perfectly reflecting those smiles in front of him, for him.

I see his back is to me. He's holding hands with his key worker. And they take a few steps.

And then he let go.

3, 4, 5, 6 steps, no idea how many. I lost count through the wet eyes. But I could see that Aurora Borealis again. Twice in a lifetime, and here he was only 3. Let's roll.

And that room was the very definition of joy. Because they all knew from day one he would dig that out and all they had to do was give him the opportunity. Just let him be. This three year old holder of that condition which keeps telling him 'yes, yes, you'll do it some day' and his steely-eyed half Chicago half Mauritian grit looking it dead in the face and saying, time's up. Done waiting. Someday is today.


Coming up on a year later, Rukai's walking is still unsteady, sometimes still requiring the hand holding. We couldn't possibly walk to the shops or go out without the stroller, or the hip seat because there is always exhaustion and a needed rest. For now. This too shall pass, as they say. He will get fed up of the hand holding and put it down.

But we have added on 'dancing'. And the best little jog in place I've ever laid eyes on. It's more of a shuffle but he beams and that is all I need to know.

But as I live and breathe (only now 'just' breathing mind you ;-) ) there too will come a day when he will run. And jump. And skip and kick and bounce and hop and tumble and every last emotion will come out of me at pace, pouring from my pent up heart and that place in my head whispering 'what if'. I will see. I will burst. I will do all those things along with him.

Pride of my pride.

The day will come and he will let me know when that is. Until then, I will do my piece, saying my peace, on that societal thing. That's my battle.

Rukai will look after the rest.


I see you've been writing your hand off this past week, so here's another one for you for next week! Tell me about a time when you really believe you were only able to get through a difficult time because your support network circled the wagons and lifted you? Do those who supported you then really know just how much they helped you?'

With that I will leave you for now with warm wishes that all is well in your world. Thoughts of spring are keeping me going and I hope next time I write to you it is 'sans cough'.

Best wishes from the other side of the ocean.

Maxine x

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