Wednesday, 26 March 2014

Mother's Day - What my Mother Taught Me

Mothering Sunday is fast approaching, the fourth Sunday of Lent and thus a moveable feast in line with Easter and the lunar calendar.
"Although it's often called Mothers' Day it has no connection with the American festival which shares its name. Traditionally, it was a day when children, mainly daughters, who had gone to work as domestic servants were given a day off to visit their mother and family."

"It also holds religious significance, since centuries ago it was considered important for people to return to their home or 'mother' church once a year. So each year in the middle of Lent, everyone would visit their 'mother' church - the main church or cathedral of the area. And most historians think that it was the return to the 'Mother' church which led to the tradition of children, particularly those working as domestic servants, or as apprentices, being given the day off to visit their mother and family."

But what does it mean to you?
Sixteen years ago it was my first year as a mother, and it happened to coincide with my birthday. A special day indeed, my first as a mother myself, having previously only considered the day in the context of myself as a child. My own Mum is amazing, and I count myself incredibly fortunate to have had such a stable and loving environment to grow up in, nurtured by loving parents with a steadfast, caring and capable mother. A hard act to follow.

My first Mother's Day was also particularly poignant since (as is so often the case) my life failed to live up to the idealised master plan I intended for myself as a naive child. I found myself a single mum, working long hours miles from my family coping with a baby with chronic reflux. But like my own mother and millions of others, it takes a lot to get me down, and such trivialities are relatively easy to ride through at the tender age of 24, when sufficient sleep is a pleasant change rather than a pre-requisite for sustained sanity....

Sixteen years and a whole ocean under the bridge and I am the proud mum of four, with a loving husband, life partner and friend to share life's ups and downs. The learning curve of life has been as steep as any climbing wall at times, but Mother's Day is when I celebrate my greatest achievement in life - my children and my status as their mum. I'm far from perfect, but like the vast majority of mums across the world I put my children first and strive to be the best mum I can be.

For me it is also a day for remembering the simple pleasures of being a mum, for forgetting my status as nurse, social worker, advocate etc. Like many mums of children with disabilities and medical conditions, it's all too easy for life to become a round of caring and meeting additional needs, fighting their corner at school, ensuring they have the best opportunity to realise their potential despite the challenges they face. But on Mother's Day I will be focussing on the normal, the mundane, the oh-so-valuable and special daily aspects of being their Mum. So in that respect my childhood master plan did indeed come to full realisation, albeit not as simply as I imagined. Because from an early age, more than anything in the world I wanted to be a Mother, a Mum, someone's Mummy. And it is an incredibly fulfilling job on every level, bringing with it more challenges than I could of dreamt of, stretching me more than any corporate job and providing the deep job satisfaction any employee dreams of. It is, without a doubt, the best job in the world.

One of the most important things my own mother taught me is to be resourceful. Even when life doesn't pan out as anticipated there is always a way through. There is always hope, always a choice and an alternative path. Such a valuable life lesson, and one I hope my children will learn from me too.

So to all mothers everywhere, and in particular to my own, whatever your day means to you, I hope March 30th is everything it possibly can be. I will be shuttling between dancing and Cross Country, doing what I love most, with those who make me complete.




Sunday, 23 March 2014

When does Caring become Comedy?

This might seem an utterly insane post title, but bear with me.

I have four children with additional needs. I used to say "3" but #1 son has more recently developed problems of his own. Nothing major, but foot surgery (both feet) for permanently dislocated toes due to a connective tissue disorder is definitely not run-of-the-mill.

The appointments for my brood, plus my own (I have two autoimmune diseases, osteoarthritis and pretty severe allergies) and my husband's (glaucoma, the genuine full-on kind with optic nerve damage) are utterly overwhelming at the moment. We average four appointments a week between us. Some local, some in London. And all of these understandably involve my participation - although I am excused many of my husband's eye appointments. I am invariably planning appointments, notifying schools, ferrying children around and attempting to ensure clinic letters are communicated amongst professionals involved with our family. It's a full-time, thankless job, which prevents me taking on alternative employment.

Knowing that there are many others worse off, and grateful for the support we sometimes get I don't often moan, but there does come a point beyond which "normal life" (whatever that is) ceases to become an option, at least in the short term. This week, we undoubtedly pushed through that boundary.

Wednesday, 19 March 2014

When is assault "Assault"?

My son was attacked at school today, injured sufficiently badly that his school felt the need to call an ambulance to be on the safe side. But when you have a child with Special Needs the focus is invariably on the causes and reasons, rather than the actual incident. But it's a complete can of worms.


I got the call after lunch, having only just dropped his twin siblings back at school following a local paediatric review. I had gone straight on to our local pharmacy to collect prescriptions. It was't an unusual morning, we currently average three appointments a week in what has become quite an exhausting and relentless cycle.

It was one of those calls which makes the world around you slip away - you struggle to hear properly once the word "ambulance" is mentioned and your imagination cranks into overdrive. He was apparently ok, and there was no huge need for concern but my mind was spinning as I got over to his school as quickly as possible.

Saturday, 15 March 2014

Fitting it all in - exercise and additional needs.

Many people ask me how our children manage to fit so much in, and participate in activities despite obvious difficulties. I wrote this for the FABED magazine recently about how we juggle multiple health and activity in our family.

Like any mum with several children I am often split in several directions at once, to ensure that all receive as fair a portion of my time and attention as possible, and have their needs meet. But with all four having health issues this can be particularly tricky, add to that huge age gaps and an husband absent much of the week and a degree in juggling is not only advantageous, but a prerequisite for survival.

All my children, like many with EGID (see above - “What is EGID?”), are hypermobile and suffer side effects from this condition to some extent or another. All need regular exercise to strengthen their muscles but in different ways, and one is on the Autism Spectrum and resists any exercise he regards as “prescribed” so you have to employ every ounce of cunning to sneak up on him!


It might seem that exercise, which can cause pain, is a bad idea with hypermobile joints. All joints are supported by ligaments and muscles though and if the ligaments are weak, muscles need to be supportive and strong if at all possible, but not too tight. Otherwise partial dislocations (subluxation) and full dislocations are possible, and injury more likely due to weakness.

It’s a balancing act though as overdoing things can lead to considerable pain (especially at night). Muscles also frequently over tighten, especially with age to compensate for weak ligaments which can cause further problems so professional advice is always recommended before enrolling your child on a sports programme. 

We do our best to keep all the children mobile, and as a firm believer that sport brings huge benefits all round (socially, emotionally, physically) I was adamant that all were going to be as active as possible with sensible input from health professionals where appropriate.

Sunday, 9 March 2014

Everyone needs a back-up Sunshine

My youngest son's favourite cuddly toy, partner in crime and constant comfort is "Sunshine" a monster of dubious origin which Father Christmas kindly sought out for him three years ago to match the class travelling toy. As it happened, Father Christmas was sourced exactly the same toy that A's class had, so naturally he sports the same name.


All my children have fallen in love with muslins, probably no coincidence since all four had pretty severe reflux and would constantly regurgitate feeds. Muslins were everywhere, no one picked up, let alone held a baby without one, even as toddlers muslins were in constant use. They have had different names over the years, perhaps my favourite being "zhou-zhou" or "jou-jou". (A cross between a "shh" and a "j".) It transpired several years later that this was in fact a toddler corruption of "tissue", but that's what happens when you have glue ear....




Tuesday, 4 March 2014

Apparently it's "Daughter's Week"

Seriously, this has to be an American creation. A day for everyone - it's the occasion market's dream. And why not? Surely we are all worth celebrating in our own unique way.

But that's precisely the point. These "weeks" and "days" have very little to do with celebrating individuality, especially not "Daughter's Week".

Currently doing the rounds on Facebook, from "Thinking Out Loud"

Recently I wrote about Goldieblox, the new engineering toy focussed on girls in America and how I abhor the dumbing down of girls and the genderisation of toys. The issue has gathered pace and many have now joined to support the excellent work of the "Pink Stinks" and "Let Toys be Toys" campaigns. Rather than repeat myself I encourage you to read my piece, and visit those campaign pages - and not because this week is "Daughter's Week" but because last week was Eating Disorders Awareness Week.
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