The final puzzle piece

Blue skies were hidden above grey mist as we walked along the Southbank to the Evelina. I saw her heart on the screen, heard its beat sounding exactly like it did when my belly was filled with her. The “whuuf, whoof, whuuf, whoof” filled the ultrasound room and I watched the tropical storm of colours light up her heart on the screen – red, blue, yellow – like I was watching the weather channel predicting storms ahead.

Every time the sonographer paused my own heartbeat took a pause as I tried to see what she was seeing in my daughter’s heart.

The ‘specialist’ doctor – who didn’t even know who had referred teengirl or even the name of the genetic disorder – explained that her heart was fine in relation to the genetic disorder (that’s exactly what she called it!) but the sonographer had spotted a very small leak in her mitrial valve, but it was nothing to worry about and not related to the genetic condition. I took shorthand notes as I have always done with all of teengirl’s medical appointments.

After teengirl’s appointment we took joy from the little things London laid on for us – the little boy going “wheeee” as he slid down the Evelina’s slide we were too tall to slide on. The smell of Christmas at the German market, the busker’s gravelly voice as he sang “Driving Home for Christmas”, the didgeridoo played with such passion. And the knowledge that right now Ehlers-Danlos Syndrome isn’t eating her heart.

Over the past four years I’ve watched teengirl deteriorate but none as fast as this year. She’s gone from being a young girl who spent hours jumping on our trampoline to a 15 year old, old women who struggles to walk for five minutes, can’t write for ten and finds climbing stairs an almost impossibility such is her pain.

Teengirl was at the Evelina children’s hospital to have her heart scanned. Just two months before she’d been diagnosed with hypermobility in her small joints and being in the spectrum of Ehlers-Danlos Syndrome – a rare genetic disorder of the connective tissue with several different types. One of the first things they do is scan the heart to ensure there are no vascular issues caused by EDS.

Because teengirl suffered a subdural hematoma (brain haemorrhage) at nine months old that neurologists failed to investigate reasons for, and her hypermobility is focused on her small joints – with subsequent pain in her large joints – her consultant is concerned that she may have vascular EDS type 4.

Over and above all the physically debilitating problems vascular EDS serves up it can also cause blood vessels to erupt and cause serious vascular problems.

It is life threatening.

holding my breath

That afternoon I exhaled, just a little bit, after holding my breath for two months. As I drove home from work I realised my chest had been slowly filling up with tears over the past couple of months. My shoulders have moved closer to my shoulders, my body tight as a racehorse ready to run, every sense on hypervigilant alert.

My PTSD was back with a vengeance.

I knew the day itself would bring me emotional flashbacks. But it’s only with hindsight I realise I’d been suffering from them every day as the day rushed towards me.

It didn’t matter the outcome. What mattered was reaching it without falling down, without letting go. What mattered was making sure the tears stayed in. What mattered was making sure my protective cage was around me holding me up.

What mattered was managing to continue to breathe without breath.

What mattered was making sure I didn’t let her down, that I was her scaffolding, the wall for her to lean on, the sweeping brush to collect up her shattered pieces should the worst happen.

What mattered was that she knew I was there for her and always would be.

Afterwards, I felt so fragile I was scared I was going to break. I should’ve been happy but all I wanted to do was get under my duvet, curl up and sleep for a whole day cocooned in slumber, free from dreams of hospitals and rollercoasters, doctors and needles, judgement and humiliation.

**I am at the start of a long journey of education about Ehlers-Danlos Syndrome (EDS). Teengirl is still a long way from definitive diagnosis of type – if she ever gets one. Obviously I’ll keep you updated of our journey.

Right now, I still don’t know all the ins and outs, the facts, the procedures, guidelines or even the correct medical terminology to use in relation to EDS.

So please don’t rely on my blog for facts, please visit Ehlers-Danlos Support UK where you can find out all the information you need.**

 


Fitting the puzzle pieces together

Just one week after I started work the one thing I feared would happen, happened.

After 15 years at home watching and waiting for the ticking timebomb inside my baby (teengirl) to once again explode, and as I tried to find the final jigsaw piece that would finally explain what caused her brain haemorrhage, I got a job.

A week after I started what I thought would be a routine hospital appointment for teengirl to be referred turned into a diagnosis of hypermobility and a diagnosis that teengirl is within the specturm for Ehlers Danlos Syndrome (EDS) – a rare connective tissue genetic disorder with several different types featuring many various symptoms and signs and experiencing varying severity.

Teengirl’s type is as yet unknown but given her symptoms and medical history – of which there’s so much more than I’ve shared here – it’s leaning towards Type 4 vascular.

The life threatening type.

Teengirl has been in pain for several years now. Our previous GP repeatedly fobbed us off telling us the burning pain in her knees when walking up hills or stairs was just growing pains and gave her exercises that caused more pain in her knees.

New GPs at the surgery assured us it wasn’t growing pains and referred teengirl for physiotherapy. The fantastic physiotherapist couldn’t understand teengirl’s pain as it reacted and responded unlike anything she’d ever seen before. The only thing she could come up with was perhaps it was linked in some way to the brain haemorrhage.  And so followed 6 months of knee clinic where teengirl joined all the pensioners who’d had knee surgery.

But her knees continued to hurt and knee clinic made the pain worse. Soon she was in experiencing the burning sensation pain in her knees walking on the flat..

Teengirl is due to sit her GCSE’s in 2015 and has mock exams next month. So when, in the summer, she began complaining of horrendous pain in her fingers and wrists when she was writing and also pain in her toes we returned to the GP.

Teengirl’s always had ‘weird’ fingers – exactly like her dad’s – they appear to dislocate on their own, she can bend her thumb right back to touch her wrist and bend her fingers in strange ways and at each joint, they also hyperextend.. Her toes are very similar.

This time a hospital appointment was requested with the GP suspecting rheumatoid arthritis or lupus or something else in that vain.

The day of the appointment dawned and off teengirl went with her grampa (I couldn’t get the time off work in my new job). She was upset when I got home from work but also happy because the diagnosis means she’s not mad, the pain she’s in every day is real.

Last week was her first occupational therapy appointment – one I had to fight for as they initially refused her referral!!! But once we were through the door they were amazing and teengirl’s OT has recommended she uses a laptop at school rather than write especially during exams. Teengirl can’t write for longer than 5 minutes without experiencing extreme pain and her handwriting is illegible.

Next Friday teengirl’s got a heart scan at the Evelina at Guys then a few months later a follow up hospital appointment where I will be pushing for genetic and skin tests because she needs a definitive diagnosis even if it means knowing she has a life threatening genetic disorder.

Unfortunately most painkillers don’t help and there’s no cure for either hypermobility or EDS.

**I am at the start of a long journey of education about Ehlers-Danlos Syndrome (EDS). Teengirl is still a long way from definitive diagnosis of type – if she ever gets one. Obviously I’ll keep you updated of our journey.

Right now, I still don’t know all the ins and outs, the facts, the procedures, guidelines or even the correct medical terminology to use in relation to EDS.

So please don’t rely on my blog for facts, please visit Ehlers-Danlos Support UK where you can find out all the information you need.**


9/9/99

I wrote this blog post back in August this year. After writing it my life changed so suddenly and so completely when, in the space of one week I got a job, that I didn’t get to post it. So here it is now…

Fifteen years ago on the 9/9/99 my life changed irrevocably when teengirl, or baby girl as she was then, got sick.
Less than a week later she was in a neurosurgery ward fighting for her life having already had one brain surgery.
And yet despite that serious surgery doctors were still convinced my baby wouldn’t survive that Thursday night.
Then when she did they didn’t expect her to survive the weekend. Every time they told me this I told them they were wrong. And they looked at me like I was either mad or I just wasn’t hearing them.

Two more brain surgeries later, two blood transfusions and after an e-coli infection in the fluid around her brain failed to beat her the doctor’s finally began to see the strength I saw in her – small smiles began to brighten their faces when they came into her room.

Six weeks later and my baby who was repeatedly expected to die was sent home from hospital looking like her head had a fight with a stapler and a cross-stitcher.

And I attempted to breathe out after the truck that hit me every morning drove away. But the breath was stuck firmly in my stomach, a knot of hard boiled air just sat there.

Before teengirl got sick I chased my dreams so hard that sometimes I hit them with such force I didn’t recognise them through my daze. My twenties were filled with adventures and terror; highlights and lowlights; fights; parties; joy; happiness; discontent.

In my twenties I got married – twice. Engaged 3 times. I also got divorced twice. I had two children, lived in France, Spain and America twice.

I had a great job as a national newspaper news journalist before teengirl got sick. I worked hard, it was stressful but damn I loved it and was actually pretty good at it. News stories I broke made front pages around the world, news stories that I’d uncovered changed laws and saved people’s lives.

And it hurts me to admit, in fact it terrifies me to admit, that I haven’t worked since the 16th of September 1999 and neither have I chased my dreams. I retreated into a space of tightness, exhaustion and fear where I felt safe despite constantly feeling afraid. A space where I had as close to total control as I could.

For the first year after teengirl came home I was a terrified wreck. Neurosurgeons had no idea what caused her subdural haematoma and they’d no idea if it would happen again.

The day I took her home from the hospital teengirl was a ten and a half month old beautiful baby girl with a shaved head featuring black stitches in a criss cross pattern down one side and a multitude of staples running from the front to the back of the top of her head that made people stare in disgust.

Just minutes before teengirl was discharged doctors told me she was a miracle. That I should be thankful she was alive. Then they told me they didn’t know what effect the brain haemorrhage would have on her: they didn’t know if she would walk or if she would talk, what she would be able to do.

Now you all know that teengirl can walk and boy can she talk, but those first few years were terrifying for me.
Doctors told me not to wrap her up in cotton wool, to let her go, let her fall, let her bump her head. When she walked at 18 months that hard boiled breath that lived in my stomach grew wings and flew to my throat with every tiny little wobbling step she took.

I bet you can guess how fast those wings of fear beat when this tiny little miracle with the head that was too big for her body opted to run everywhere instead of walk. Oh good god, how many times could one little girl fall over?

I couldn’t go back to work. Teengirl had first got sick when I was at work. I don’t think I ever forgave myself for not being there that day.

Year one featured terror, year two fear and mild depression, year three more depression with a side order of hope, year four I was diagnosed with PTSD and so on.

And I just never returned to work.

For the past 15 years I have stayed at home with teengirl and teenboy and then baby boy when he came along four and a half years ago. I have been firmly and fearfully ensconced in my comfort zone, living half a life – living an illusion.

Last week I did an NLP exercise that involved looking back 5 years and writing down what my life was like. I then wrote down where my life is now before writing down where I want it to be in five years from now. I was absolutely horrified to realise that my life today is the same as it was not just five years ago but 15 years ago.

And it turns out that I’m actually incredibly unhappy in my not so comfy comfort zone. What will I do every day when babyboy starts school?

I can’t continue to do the same thing every day and expect different results. It’s time for change. It’s time for me to climb out of the space that holds me too tightly perpetuating the hard boiled breath fixed like a fist in my chest, for me to stop trying to control the past, present and future, it’s time for me to let go – to rediscover my dreams and begin to chase them again.

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What Do You Say When you Look in the Mirror?

On the way to the opticians this afternoon I asked teengirl if there’s anything she doesn’t like about herself.  After a few seconds silence she answered: “My teeth.”

“Is that it?” I asked her.

To which she replied: “Yeah, I like what I see in the mirror.  I like me and I like how I look.”

And the reason she doesn’t like her teeth?  Because when she was younger she hit her two front teeth on the edge of a swimming pool and took a big chip out of both of them right in the middle.  The jolt also pushed them both out a bit so they stick out ever so slightly.  But she doesn’t dislike them enough to bother trying to fix them with braces.

To be honest she sounds very like me at 15, at 25, even at 35 when I’d put on a lot of weight because I’ve never obsessed over how I look to other people and I’ve never put myself down in front of any of my kids.

I’m happy to stand up in front of all of you right now and admit: my name is Mumtoteens and I like myself.  I like what I see in the mirror, I always have.  And I like the person I am.

I grew up around a mum who didn’t like how she looked, a mum who called herself fat, who didn’t bother to put make up on because “there’s no point, there’s nothing I can do to make this face look nice” and call herself a stupid bitch when she did something wrong.

I so easily could’ve ended up despising myself the way she did.  But my dad saved me from that.

I was, and still am at 43, my dad’s princess.  He made me believe I was worthy, that I was clever and beautiful and that I could do anything I wanted in the world so long as I believed in myself as much as he believed in me.

I saw myself reflected in his eyes and liked what I saw.

My dad showed me how I should be treated by men, by other women, by the world but most of all by myself.

Research has shown that 71% of girls feel pressure to be beautiful but are less likely to let anxiety hold them back if they have a positive beauty role model in their lives.

I’ve managed thankfully, to take my dad’s legacy rather than my mum’s and hand it down to my own daughter who has grown up without her father around.

This is my legacy for my daughter – she is comfortable in her skin, she is confident despite setbacks, she is optimistic, kind and quick with compliments.  And she believes that beauty lives in everyone and everyone has the right to feel beautiful.

When I watched the short film, Dove: Legacy, it made me sad: so many young girls (not even teenagers yet) unhappy with their bodies.  So influenced by their mum’s unconscious words they dislike the same parts of their bodies as their mums.

But with 41% of women rarely feeling positive about their appearance and with a quarter of British women with no influential beauty role model in their lives it’s no surprise that mums are putting themselves down, talking negatively about their looks.  There are only two reasons why I don’t do this – one is my dad and the other is because my mum’s dislike of her looks was so passionate it made me want to not be so cruel to myself.

Dove’s research shows that as soon as women become aware of the impact of their words and body language they want to change it to become better role models for young girls.  And the one piece of advice most women want to share with young girls to promote a positive beauty legacy is “learn to accept who you are” with 35% of women opting for this.

Leading language expert, Professor Tony Mcenery of Lancaster University said: “By learning to monitor one’s language and filtering out the negative and emphasising the positive, we are more likely to pass on positive, life-long behaviours that have the power to affect self-esteem.”

Nearly 1 in 3 women said the one thing they’d change would be to be more confident, so they can pass their confidence on to younger generations.

Please get involved to help our future generations of girls feel confident with and comfortable in their own bodies by tweeting  your own positive beauty legacy pledge on Twitter, tell the world who you inspires you to pass on a positive beauty legacy using the hashtag #FeelBeautifulFor.

Watch Dove: Legacy short film here


Morrisons Mums Bank Holiday Challenge

I’d planned to have family and friends over for a BBQ on the first Monday May bank holiday but unfortunately my builders had other ideas!

Apparently an emergency meant they had to turn up to take down the chimneys on the bank holiday instead of the Tuesday.  So that put the kibosh on the BBQ – cos nobody wants builders dust in their burgers and sausages!

I’d planned to take lots of photographs and maybe a couple of videos at the BBQ of everyone having a great time enjoying the food from Morrison’s but sadly that had to go as well – cos nobody needs to see a picture photobombed by a builders bum!

So instead it was just me and the kids.

But what to cook instead of traditional BBQ fare?  I opted for a meal that appeals to kids, is easy, resembles junk food but actually isn’t and is even tastier than the frozen version.

For our bank holiday dinner I created homemade wholegrain chicken nuggets, sauté baby boiled potatoes and broccoli.

low GI, low sugar dinner - homemade wholegrain chicken nuggets, broccoli and saute baby boiled potatoes bought from Morrisons cos I was a #morrisonsmum

homemade wholegrain chicken nuggets, broccoli and saute baby boiled potatoes bought from Morrisons cos I was a #morrisonsmum

As most of you who read this blog know I’m insulin resistant so I eat a Low GI diet (FYI I’ve lost 3 stone since I started and feel healthier than I have done in years), hence, the wholegrain chicken nuggets.

wholegrain low GI chicken nuggets recipe - how to make healthy chicken nuggets that are low gi and low sugar but still tasty

For breakfast we pushed the boat out and instead of toast or bran flakes we devoured brown wholegrain rolls topped with oats filled to the brim with bacon and topped off with lashings of ketchup.

bacon on wholewheat oat topped rolls with lashings of tomato ketchup - the perfect Bank Holiday breakfast

bacon on wholewheat oat topped rolls with lashings of tomato ketchup – the perfect Bank Holiday breakfast

I’m sure you don’t need a recipe for these, we all know how to cook a roll with bacon.  Mmmmm, these ones were particularly delicious and believe it or not Low GI.

Our weekend’s meals also included a Sunday roast and a Keema Curry with wholegrain basmati rice (if you haven’t tasted this rice do it, it’s delicious as well as low GI).

My snacks consisted of strawberries which were great but not quite as sweet as the Spanish ones I was eating in Cornwall last week, salted popcorn (Morrison’s is good but just like every other supermarket’s own make it just doesn’t match up to Butterkist salted), Ski smooth yoghurts and Belvita biscuits (both of these two were on offer and therefore a bargain for me).

a box of strawberries from Morrisons for just £3 #morrisonsmum

For lunch my cold meat and salad sandwiches included lettuce from the living salad I purchased at Morrisons.

What’s a living salad I hear you cry? Well…It’s a lettuce that’s still growing.   I know…I couldn’t believe it!

You buy the living salad still planted in the soil, sit it on your windowsill, keep it watered and voila it will last for up to ten days.  And when you need some lettuce to put on your sandwich or for your side salad you just cut some off, wash it and use it.

Amazing, just absolutely bloody amazing.  The living salad is THE BEST thing I’ve ever bought from a supermarket EVER!!!  And it cost just 99p.

my windowsill living salad - best purchase from any supermarket EVER

my windowsill living salad – best purchase from any supermarket EVER #morrisonsmum

You might wonder why instead of telling you all about the hell my teenagers are putting me through I’m sharing what we ate over the weekend.

Well it’s because Morrison’s challenged me (and a load of other mums) to find out if their new lower prices were as good as they claimed #morrisonsmums.

I’d love to be able to tell you all that their prices are great and it saved me a fortune, but it was difficult for me to work out cos I buy my meat in bulk from Costco and try to shop quite regularly in my village but I was reasonably impressed by their prices and I’ve included a price per portion breakdown for the chicken nuggets and the bacon butties below.

I do have one complaint about Morrisons supermarkets – and I mean every single one I’ve ever been in – have no rhyme or reason to their layout.  Most supermarkets adhere to the same sort of layouts so you know roughly where to find the food on your shopping list.  But Morrisons don’t seem to follow this rough rule, they make their own rules, they walk to the beat of their drum.

Normally I’d have all respect for that but when you’re searching the aisles desperately trying to find the food you need as a 4 year old constantly asks you questions, their refusal to play by the same rules as everyone else can be rage inducing.  I ended up having to bribe Babyboy with some cars just so he would stop talking long enough for me to search out the items on my long and apparently never ending shopping list.

So kudos to Morrisons for lowering prices at a time when families are really struggling financially, as a cash strapped mum I appreciate it.  But please sort out the layout of your supermarkets so I don’t have to search and search and search.

  • CHICKEN NUGGETS, POTATOES & BROCOLLI COST PER PORTION (I made enough for 4 and froze a portion of nuggets) – £2.04
  • BACON BUTTIES COST PER PORTION – £1.09

 

affordable, tasty fruit at great prices is what I want as a mum #morrisonsmum


Lou Treleaven, writer

Writing for children, submitting manuscripts, reviewing great books and other wordcentric activities

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