unintended consequences OR what I’ve learned

I’m sure you’ve seen the video of what happened after wolves were reintroduced to Yellowstone National Park. An additional species transformed the ecosystem of the entire park. The pecking order was disrupted, different plants grew, other species returned, and the very routes of the rivers changed. Many of these changes were unexpected. The park was transformed.

We’ve had our own transformation in the McSpec world recently. The change agent is dog>terrier>cairn westie mix>Harry. We don’t know what’s hit us. The bundle of energy who came along a month ago surprises us every day.

Some of you may remember Jake, the grumpy westie, who used to be part of our family. He was an Eeyore sort of character, a bit depressed, stoic and not great with people. In contrast, Harry is a Tigger- bouncy, enthusiastic and very friendly. Trees are exciting, as are individual leaves, cushions, passing strangers, hats, shoe laces. We are not allowed to go upstairs unaccompanied in case he misses out on an open door, a cuddly bed or a window to look out of.

You’ll guess that such enthusiasm can be both destructive and exhausting. Some slippers, hats, his cuddly bed, and assorted soft furnishings have been killed. The bathroom bin has been emptied and contents chewed, and the upstairs landing decorated with toilet roll. We’re learning.

Now he has a hard bed, hats have been moved out of harm’s way and doors are closed. And the entire circulation in the upstairs of the house totally disrupted. Until recently the doors were always open, air swishing round all the rooms, doing its thing. I didn’t notice that girls never opened windows, or that the bathroom was cool. (The bathroom has 3 outside walls, so I’m not exactly observant…) Thanks to Harry, I know that bedrooms are stuffy and the bathroom is freezing.

I’ve also remembered poo bags, soggy walks in the rain,┬áthe light of the sun on the river, the daily boost of fresh air, thinking space.

Thanks to Harry.




rare? together!

I came to the world of rare disease when my late mother, Herself, got ill. We were all bothered and bewildered, and not at all sure of what was going on. I googled; we cried. We spoke to doctors; we cried. There was more searching and more crying. It was not a cheerful time. Herself was getting progressively worse, we didn’t know how to cope, and we felt totally isolated.

Until somebody reached out, took our hands and helped us to take the next step. And the one after that.

My mum died in 2011, and my bloggy buddies and real life friends kept on holding tight. You all had my back then, and do still, because there are always the wobbles. The rickety bridges to build and to cross, the anxiety to face down, the fatigue to recover from, and the brain fog we all have to accomodate.

It can be easy to be angry or disheartened in the worlds of rare disease and health transformation. I can still do a good rant. But my family have been struck by rare disease more than once. I can’t walk away in a huff. I have to take another’s hand, gather myself and reach out again. We keep needing to move into the discomfort and the challenge to make connections to make things happen.

We can work together. We can make a difference for one another and for ourselves.

It doesn’t just happen. It takes all our networks, our shared understanding and our commitment.

Step by step, holding hands, supporting each other.


It is international rare disease day. Our charity is holding 2 events today, and an all Ireland conference on rare disease on Monday 5 March. We have patients and families, local councillors, an Irish government Minister, clinicians and policy folk gathering in rooms across Northern Ireland to consider patients as equal partners in research, training, service design and delivery, and in shaping the future. In the current argot, we are coproducing. It’s the only way.




all of a sudden

You know what it’s like. Life trundles on, each of us doing our own thing. Seasons change, children grow, work/ volunteering is what it is, and it feels like nothing much happens.

And then. Everything happens at once, all the things in the same week, and you realise just how much has changed.

We rescued another wee westie, Harry. It’s been a year since the grumpy guy went and died on us, and we’ve been looking for a chap to love for a while. Harry came home with us a week ago, sleepy from the vets and a little bewildered by home comforts. The next morning he decided he was in his element and demonstrated his full speed down the street to celebrate. He has a waggy tail, loves cuddles and owns our hearts. He has made himself well at home sleeping on our beds, on sofas, chairs and occasionally, his own bed. Random piles of clothes that girls haven’t got round to putting away are his favourite, closesly followed by the box of winter hats and wooly scarves. All is well, but we need to keep working on the ‘not killing cushions’ thing. And the ‘investigate all the visitors’ handbags thing. We’ll get there.

Girl2 went on a school ski trip. Sixty 15 years olds let loose on snow- it’s a wonder everyone made it home without injury. She resorted to singing when scared. Never mind the hills being alive to the sound of music, the Italian alps resounded to the sounds of ‘I’ll tell me Ma’, which was probably not what they’re used to. In a few months she’ll be off to Milwaukee for a month, and I’ll be a nervous wreck.

Girl1 had a school formal to go to. In the dark ages, my school formal was held in the school, with teachers, dinner ladies and nuns. We had to be interviewed by the Chief Nun in advance, and the bona fides of our dates checked out. I brought the only guy I knew, who lived 2 doors away and happened to be a son of my geography teacher. I had the big hair (early 80s short curly frizz afro style) and the big glasses, and a red taffeta dress my mother made. I can’t imagine being able to make a dress, or ever having the urge to do so. I can clearly imagine that it was the only way she could get me to wear something that wasn’t a sack. My beleagured, stylish mother, doomed to having a dumpy daughter with no interest in fashion or make up or being sociable. She’d be so chuffed with her grandchildren who now have to cope with my lack of style or make up know how. (The unsociable issue has been largely overcome.)

Knowing she’d miss the event, Girl2 took her parents in hand, making sure we’d step up for her sister. We had to prepare for added taxi runs for the spray tan, glam nails, make up & hair because nobody does those things themselves. How could I imagine that she’d draw on her own face?? Do I know nothing??… The biggest concern was that we wouldn’t realise about the photographs, and we’d be lounging about in PJs or a football shirt. How could those pics be shared with the world? I panicked and got Spurs Fan to buy a big bunch of flowers, because all the formal type pics I saw had flowers in them. Naturally we all stood in front of the flowers, and they’re not in any shot. Next time, we’ll pose properly. There will be a next time, and then I’ll know about getting my nails done too, and making sure to bring an umbrella to the tanning place so the rain doesn’t wash the stuff off teenaged feet before it sets.

As if all that wasn’t enough for a week, the NI festival dancing championships were on. There’s a supportive group of dance buddies (and moms!) who called round to be part of the pre formal posing, and who were all dancing on Saturday and Sunday. For the first time ever Girl1 got a podium place, with her couples partner. Many celebrations.

Many changes, including to wordpress. I can’t access the pics on the pc to share them with you any more. If I figure out how to do it, I’ll edit some in. Just imagine a cute westie, a talented skiier, a beautiful girl and her slim, stylish parents and you’ll be there.

I’m tired

Tired of being mentally and physically exhausted.

Tired of seeing people I want to talk to, and not remembering what I want to talk to them about.

Tired of forgetting to order medication, and then not lifting the prescription because I couldn’t find a parking space I could confidently put a tiny car in.

Tired of having no confidence.

Tired of anxiety.

Tired of turning down opportunities to make a difference because I can’t do any more.

Tired of justifying what I do.

Tired of forgetting important things.

Tired of letting others down.

Tired of not being who I want to be.

Tired of being overwhelmed by simple stuff.

Tired of being demoralised.

Tired of being a sensitive little soul.

Sick & tired of being sick for 11 years.