Wednesday, 10 February 2016

No, but I have a SON. | #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

Last week your reply to my question really hit me in the feels. I particularly liked this part:

"But life is not about perfection. It's about being broken, over and over again, and finding the strength to sweep up those pieces and put them together. And when those pieces are glued together, we might look at ourselves and see those cracks, those visible scars, and think, why can't it just be easier? Ease does not lead to growth, only hard things do."


You're so right. We don't grow when it's easy. We have to bleed and sweat and cry and struggle before we learn anything, about anything. We have to fall before we walk. Stumble before we run. Rain before we flower.

There's been plenty of rain and far too few flowers in the past four years but as you know rain only happens outside - which should pretty much say it all. So to answer to your latest question: "How have you turned the negatives thrown at you regarding your son's diagnosis into positives?" We simply don't live 'negative' with Rukai. Don't feel it, don't allow it, don't tolerate it. We fight it off like teenage acne.

Still those negatives flying around 'out there'...well that's some list. But time is fleeting so I'll keep it simple with a story for you to chew on.

Rukai had a follow up appointment with one doctor early on which was also attended by a woman who sat throughout, observing and making notes - Registrar? Nurse? Hospital Cleaner? Pedicurist? Bus Driver? I have no idea who she was because no one bothered to introduce her to us. In retrospect I wish my mouth had released three simple words: "and you are...?" But retrospect has too many letters and is too far a look back so let's leave it there. We finished that appointment and moved out to the baby change room readying ourselves to go home. 'Random Person X' had been asked to deliver us an insert for Rukai's medical record book which contained growth charts and specific medical guidance for kids with Ds. She points out what's on each page and when she gets to the growth charts I smile and say very nonchalantly that I'll be asking them to plot his growth on the 'typical' chart as well as on the 'Ds' chart.

"No, you have to use the Ds chart," says she.

Slightly startled by the 'no' I force my smile to remain and say "I'll use it, I'm just going to have them use both."

"No, you can't use the other one, you have to use the Ds one."

Again with the no. Are you seriously arguing with me about this?
Now my blood is boiling and T is waiting for the ball to drop.
I look her dead in the eye and ask "do you have a son with Down's syndrome?"
She says "No, but I have a SON."

I heard the enunciation. I saw the reaction. And I couldn't believe this nameless person had the audacity to suggest that I was in no way allowed to make comparison of Rukai with 'normal' children. Oh no, not me. My kid was flawed. Mine was broken.

But she had a son.

She had a son, and according to her, here I must have had a sack of pinto beans. A bottom feeder. A cabbage. How could I have been so foolish in thinking otherwise? It was all I could do to keep from tearing verbal strips off that woman. And I tell you what, Kera, there are memories of things that have lit the fire in my belly and I'm pretty sure that interaction was actually the kindling.

So to answer your question "how have you turned the negatives thrown at you regarding your son's diagnosis into positives?" I take what someone tells me. I question the hell out of it. I believe none of it. And then Rukai proves them all wrong time after time anyway.

The only thing that affects Rukai which anyone has suggested to me (and which I actually believe is fact) is his global delay. Unfortunately, it's always presented as 'problem' when we merely view it as 'challenge'. But more importantly, to heck with us. Rukai is 4 on Saturday and I know very well what he views his global delay as, and you know what that is?

"Me."

Rukai lives his life at the speed of Rukai and no amount of testing, pressing, comparing, assessing or any such ilk is going to change that. Nor will anything make it a negative. How have I turned the negatives into positives? I take one look at my child who just keeps flinging the negatives out of his way to clear a path and charging on forward. Always moving. Always ahead. There is no way this can be negative.

Momentum is momentum no matter what it is applied to. No matter who is surging ahead from the push and who is riding the wave at the other end.

No time for negatives - even when you have just a little more time than most.

This question made me think of a post on my old blog called 'Samurai Sword' when I really looked at the subject of delay and how I viewed Rukai. The post is nearly three years old to the day and I can tell you I feel exactly the same sat here right now.

Now to hand off I have to add one more small story and that is of my past couple days. We've booked ourselves this fun pre-birthday vacation to celebrate Rukai. Time off work, ready to have some fun, in a woodsy place great for my marathon training, with a swimming paradise fun for all of us. Great meals, fun activities, you name it. Because I've been ill for the past week, and up the last three nights with this relentless cough, the plans included an unexpected doctor visit some hour's drive and 3 and a half hours away from my family this morning. I hadn't planned for that. I was really irritated. Not feeling well, I thought I'd cancel our dinner reservations and then thought, no. Let's get Rukai out and about in the bike trailer, we'll have some dinner, get back to the rental and then switch off.

Kera, we had more fun together than we've had in ages. He walked so much, grinning from ear to ear, enjoyed the ride in the trailer and here as I cannot run with these crazy lungs I managed to get lost for the fifth time and we did a lap of the route back on the bikes before we found the turn off. I'm getting my exercise after all. We had family time after all. The problems threatening to derail our adventures looking so ominous at the start, only a slight speedbump in the road. Just a little delay.

Sound familiar?

So with that I shall leave you with my own question for next week: how do you deal with the unexpected when things go 'wrong' in your world? Either with kids' issues, family issues in general, looking after yourself, etc. When something threatens to derail, how do you get back on track?

Until then, hope you have a fantastic week and look forward to hearing from you.

Love from beautiful Elveden Forest. (Barring the RAF roaring overhead all.day.long...another story altogether.)

M  x

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New to #TransatlanticTuesdays? Catch up on what you've missed here:

http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html

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