And There’s a Hand, My Trusty Fiere! And Gie’s a Hand o’Thine!

And We’ll Tak a Right Gude-Willy Waught,

For Auld Lang Syne.

It would be fair to say until approximately five minutes ago I would have mumbled my way through singing Auld Lang Syne, hoping that someone louder and more Scottish would cover up the fact. Wikipedia, I thank you. I last left my laptop with an inkling that something was in the air for our festive period, an uninvited guest. As welcome as a fart in a lift, or as a small boy crippled with stomach cramps exploding underneath the Christmas table. Suffice to say, I was right. There are sometimes, and they’re rare, I’d like to be proven wrong. We made it through Christmas day with only one frantic phonecall to the out of hours GP, and anguish over whether we should take him to A&E. I sort of thought I had this one, I was in charge of his ninth day of diarrhea. Yes he was miserable, and sore, but I thought I’d wait out and see if I could sort this, dioralyte and a feeding plan in place.

I couldn’t. By day eleven my boy was reduced to a hollow eyed, upset marionette. I picked him up out of his cot, he flopped limply but squealed in pain. Skin and bones. And so, until 6.30pm on the 31st December we reinstated The Routine. A four day and three night incarceration. So dehydrated by this bug, Rufus had shed 1.5kg. That’s more than 10% of his body weight. Serious stuff. But we were returned to the homestead on New Years Eve, which had a heavy poignancy. We were starting 2013 at home, a little improved. And it takes me to look back on 2012, the year that was. Bowie playing on loop in my head, ch-ch-ch changes.

If you’d have told me that this here, this blog, would have existed a year ago then cynicism and ignorance would have laughed it off. Portals for gossip and fashion were they not? Angry rants, fan sites, people assuming their lives may be of interest to others (ahem). My lovely Dad had been attempting to encourage me to write since Rufus’s arrival, to elaborate on the emails that I used to send from his incubator side. But I am like my son, stubborn and only willing to do things in my own time. Then it’s my idea. The flattery was uplifting, but the truth was I was too mired in The Moment to be able to see it with any clarity.

2012 started heavily, I won’t sugar coat the pill. It wasn’t helped that a New Years Eve burglary had us up at 6am on the first day of the year awaiting the police. But the hard part was it wasn’t really due to overt ill health on Rufus’s part. He was, and had been, not great. He lacks the body mass and health to ward off illnesses, but has a resilience from an unknown place that on the most part makes this manageable at home. A relief and a burden. Acquiring unknown reserves to battle through the sleeplessness and be his very own nursemaid. And after our first Christmas had been somewhat of an anti climax, it was very much dawning on me that things with his development and behaviour were ringing alarm bells. Denial doesn’t make very good ear muffs, no matter how hard you press them against your head. The Rock- his health was far better than anticipated. The Hard Place- his development really, really wasn’t. I felt alone, ill advised and bricking it.

I’d buried myself in internet searches before. I know their dangers, that bolt of worry. Medical terminology that I half understand and my overactive imagination fills the rest. So I’d promised myself to go easy on my Google habit, look into more rewarding, healthy avenues. Join a gym, take Rufus swimming, find more to do. Start the wheels in motion for returning to work. He was stable enough, I was missing the adult time. Move house, find out there’s another D joining the bread queue. 2012 was looking up, and yet still there was a gnawing isolation to our situation. It took a chance encounter in a queue at the GP’s surgery. Somebody who recognised the fear of owning up to how old your child was. And with Rufus’s diminutive stature it wasn’t difficult to lie. But over our fast becoming regular coffee chats, she brought up SWAN UK.

I was dubious, and nervous. Would they let us join given that Rufus has a partial diagnosis? Did I want to be part of their gang? But I started by reading some of the blogs. A few posts at a time quickly became evenings poring over some amazing writing, nodding in agreement, laughing and crying in equal parts. Just Bring the Chocolate, Little Mamma Said, Orange this Way… the list goes on (please see my sidebar for more). A relief. A sanctuary. A voice. Whilst in person I am more than able to take that arse end of a donkey and talk until it falls off with boredom, it’s surface chatter. I hadn’t really thought I could dig deep and expose myself, my family. And was it cheeky to think I could enter this arena with my tuppence worth? Who would care? Did I care? Caution thrown to the wind, I wrote. And the knot in my neck loosened. And family (albeit with a bias) were more than receptive. And so were friends. And here’s the part I didn’t think would happen, people I haven’t met, we became friends.

An inch by inch gravatar. Words of encouragement. Banter. I joined the FaceBook Group, sat on the sidelines for a while. Watched it unfold, went to type, then thought better of it. Who did I think I was? Sometimes frightened that once I started, my denial of Rufus’s problems was well and truly going to be broken, and where would that leave us? But I was going to have to ask someone to dance, step up and introduce ourselves. The nerves just as palpable as if it were in person. It was warm and receptive, turns out I could just kick off my shoes and do the hokey cokey. My cynicism dispersed. A freedom in a closed arena. It feels awkward writing about it, I’m a binge poster. A modern day taboo. What if I get burned by this? Give too much. Everyone’s a critic.

But I am not known, in person or on paper, for my reserve. So I’m all in. And with that I have a wealth of advice, a shoulder to cry on, a place to share the highs and lows. A place to decipher the lols. Sometimes I think I am unchanged by all that has happened over the last two years. Other days I realise I’m happy with the change. I give a hand, I receive a hand. I look forward with hope and positivity. No limits and unburdened by denial. To those that know me in all four dimensions, I wonder whether this is all more of a shock than those who know me as my words sprawl across a page. To those that know me by “what’s on my mind” or “write something”, I hope that when we do meet in person our first dates go well. And our children grow up wonkily together.

And We’ll Tak a Right Gude-Willy Waught,

For Auld Lang Syne.

P1000777

In this spirit of joining hands, SWAN UK are hosting a blogging awards. You can think as broadly as you want for the categories, you aren’t confined to the SWAN blogs but check them out here. Please, please just vote for me.

2 Comments

Filed under SWAN UK

2 responses to “And There’s a Hand, My Trusty Fiere! And Gie’s a Hand o’Thine!

  1. swanarchie07

    This I read with tears liz but tears of happiness and so glad I am part of this community as well xxx you write so well xxx

  2. We are delighted to let you know that this post has been nominated in the ‘Most Inspirational’ post category of the SWAN UK Blog Post Awards (aka The ‘SWANS’)

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

    http://www.undiagnosed.org.uk

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