I am intelligent, I promise.

I really am. Apparently, I have an above average IQ. Really, I do. And I am good at stuff. For a start, I can write. I can cook. I can crochet. I have an encyclopaedic knowledge of completely useless information and a working knowledge of genetics. I even like to think that I can partake in a little witty repartee.

However, I have a nemesis skill. Do you have one? A skill that you know you can do, that you are more than capable of delivering but every single attempt is hampered by a series of moments of your own mind-blowing stupidity. I like to do things well. And I do stupid really, really well. My nemesis is baking.

How is it that someone who loves to cook, loves a challenge in the kitchen and has served delicious, somewhat complicated meals on multiple occasions can turn into a complete idiot just because those same kitchen skills are now being turned to baking?

So, it was Moo’s birthday recently. Every year, I bake her a cake. Up until last year, it was Nigella Lawson’s buttermilk birthday cake with buttercream icing, fresh raspberries and raspberry jam covered in chocolate ganache. I baked it for seven years on the trot. Each time was stressful as ganaches split, different ovens baked at different times, etc etc. But I did get the recipe down and loved making that cake. Feedback was very positive too. Last year, Moo decided she wanted a chocolate cake covered in pink icing. So I baked a chocolate cake and covered it in pink fondant. It was traumatic but not too bad. This year, however, things went horribly, horribly wrong. A two hour bake turned into a six hour test of my sheer determination to bake a sodding cake.

Moo wanted chocolate cake again, but not a round one. She wanted a square one and she wanted flowers. Luckily, I have my dear Baking Goddess as a friend and, as it is her profession, she whipped me up a ‘few’ flowers. I say ‘few’ because I was expecting five or six and got around 40. I love her. She also told me about the CakeOmeter as I panicked about how to turn a 20cm round cake into a 23cm square cake. Pure genius.

So off I went to Waitrose to get my ingredients after having used said CakeOmeter to find out how many I needed. Came home with Moo, who insisted on helping me thereby not really helping the stress levels, put all the ingredients into the KitchenAid and got my tins ready. “Bake it on 16o degrees in a fan oven. It will give it a nice, even bake.” says the Baking Goddess, my own personal Mary Berry. Once the mixture was ready, I go to pour it into the tins. Hang on. There’s not enough for the two tins. What the . . . ?

Bugger. The CakeOmeter calculation was for one tin, not two. And I don’t have enough ingredients to make another batch. So I slap my forehead, then slap the one tin into the oven and run to the supermarket to get more ingredients.

Come back from the supermarket and check on my one layer of cake. Something isn’t right. Why are the edges cooking really fast but the middle is raw? What happened to my nice, even bake? I look at the oven. Oh good God. I’ve put it on fan assisted oven, not fan oven. The elements are on. What the heck? So I quickly switch it back, knowing I’ve now got a very high chance of producing a dry cake. Oh well, at least the second layer will be perfect.

Go and mix up a batch of batter again. Get my second tin ready. Reach for my bowl on the KitchenAid and it’s stuck. Really, properly stuck. I turn and turn but the bastard thing is not budging.

“MR G!!!! HELP ME!!!” Mr G comes into the kitchen and tries to get the bowl off. He can’t. It’s wedged on. So we end up lifting the entire KitchenAid, which is unbelievably heavy and cumbersome, and tipping it upside down so that I can pour the batter into the tin. Upon putting the KitchenAid down, Mr G says “Have you tried turning the bowl the other way?”. You know what happened next. He twisted the bowl the other way and it popped right out.

(At this point, I feel compelled to tell you that I am degree educated. I worked in the City and ran a successful business. Not to mention, I’ve outsmarted doctors on a regular basis when it comes to Moo’s care.)

During this whole fiasco, I am clearly swearing quite a lot. Moo asks to lick the spoon when I finish making the batter. When I ask what it tastes like, she turns to me and says “Oh Mummy, it’s bloody yummy.” Yikes.

The first layer of cake is already out of the oven at this point and cooling in its tin. I put the second layer in the oven. I turn out the first layer onto a cooling rack and there is only the slightest crack so it might not be dry after all. Send a photo to the Baking Goddess for a professional opinion and she concurs. Whoop! There is hope.

I turn my attention to the icing. Ganache and I haven’t been friends in recent years and I nervously start to make it. However, the baking gods are starting to take pity on me and it doesn’t split. Hurrah! Things are on the up. I get out my sugar paste icing that I bought from the shop. The lady in the shop told me how much to buy and I did as told. I start to roll it out. Holy moly! That is some seriously hard work. Bakers who do that every day must have guns of steel. I roll and roll and roll. I use the Baking Goddess’s tip of using a piece of ribbon to measure how much icing I’m going to need. Oh no. Oh no. Oh no. I don’t know if I have enough. So I roll and measure, roll and measure. Fingers crossed.

By this point, my second layer has been baking for 15 minutes of a 30 minute bake. I go and check on it. It’s raw. WTAF??! Check the oven. Somehow, I’ve knocked the oven off fan oven and onto fan assisted grill. My bloody cake, the second perfect layer, has been grilling for 15 sodding minutes! Switch it back onto the fan oven and smack my head again.

(Upon hearing all the swearing and crashing in the kitchen, Mr G comes in and asks me why I just don’t buy a cake instead of going through this every year. He is a Bakery Buying Manager, after all. Words were exchanged. Not nice ones.)

I get on with making buttercream, making the sugar paste as big as possible and chilling my ganache on top of the first layer in the fridge. Once the second layer is out and cooled (which took a lot longer than the 30 minutes), I put it on top of the bottom layer and start to ice it. The buttercream was not too dramatically awful but, upon laying the sugar paste on top of the cake (which was big enough, phew!), one corner rips wide open! Panic! Luckily, my baking helpline came through with good advice and, having provided me with so many flowers, I could hide any multitude of sins by just sticking a flower on top of it.

In the end, the cake looked gorgeous, as you can see. It turned out delicious too and not dry at all. Yippee!

Mr G asked if I’d ever bake again. “Definitely,”I replied, “I want to get better.” He looked at me as if I needed admitting. He might have a point but I’m too bloody minded to give up.

Worth the effort/breakdown.

 

 

 

 

Oh, I’ve been thrown through a loop . . .

Today is Moo’s birthday. She is so excited and it’s a delight to witness. However, it also brings up a lot of painful memories of the day that she was born. How terrifying it was, how close we came to losing her and what a little warrior she proved herself to be.

Recently, I watched a documentary on BBC2 called ‘A World without Downs?’ and it got me thinking, obsessing actually. I didn’t realise that screening for abnormalities in pregnancy was brought in without an enquiry into the ethics of doing so. No one ever discussed it and where it could lead to. They just introduced it without so much as a second thought.

Now, I am in an unusual position. I’ve had a late termination due to severe abnormalities and then gone on to give birth to a baby with a variety of medical conditions who is labelled as disabled. So I’ve been on both sides of the fence.

When Moo was born, someone said to me that I should sue St George’s for not picking up her complications and need for a tracheostomy. For the life of me, I couldn’t figure out why anyone would say that. Were they assuming that had I known, I would have terminated, just because of a trache? I, sure as hell, wouldn’t have. Mainly because I wouldn’t have realised how difficult life with a trache would be or how it was to fracture my psyche, for the first two years at least.

When picking up abnormalities, doctors have a tendency to tell you all the challenges your child will face, how ill they will be,  what they see as a poor quality of life. It’s not their fault. The only time that they see these children is when they are ill and suffering. What they don’t see is the times at home when there is laughter, love and light.

Having a disability is not easy and caring for a child with one tears at your heart and soul at times. It is really fucking hard. I now have my friends, depression and anxiety, to bring along for the ride. It can truly suck. As a parent, you cry a lot, you lament a lot, you suffer a lot but you also laugh a lot, smile a lot, love a lot. The happy times get you through the rough times. It forces you to see life through a different lens. The material becomes immaterial. You still love nice things but the import of them is significantly less. Small challenges overcome are to be celebrated. Successes are joyous occasions. Life is intense in all its pain and glory and wonder.

In the middle of all this chaos, stands a child who you love with all of your heart and then some. A child who, through their very existence, brings you strength you never knew you had, teaches you greater wisdom and compassion by introducing you to worlds you never understood.

One of Moo’s teachers said to me that the two best classes she ever taught were Moo’s and another two years later. She believes that the reason that those two classes were such lovely children was because they were the two with disabled kids in it. Moo has taught her friends that there is beauty in difference. The children in her class are some of the kindest and most compassionate you will ever meet. They know that not everyone is the same, that different does not equal less. They are already learning that the true moral test of a person is not how they look or if they win, it’s how they treat their most vulnerable member of class.

Does all of this mean that I condemn those who have ended pregnancies because of disability? Absolutely not. I completely understand why people choose termination. I did. It is a truly scary prospect and the worst decision we are called to make. The grief stays with you for the rest of your life. The tragedy is that you don’t know what you are capable of coping with or how a disabled child will positively affect your life unless you have lived with one. It’s an absolute gift, a bittersweet one, but a gift nonetheless.

My issue is that I now find myself questioning whether we should have ever been given the choice, at all. If that choice hadn’t been available, Ziggy would have died the day he was born. My grief would have been the same but I would not have been able to spare him that kind of pain. Do I regret the decision I made? Absolutely not. Do I wish that I hadn’t been given the choice? Yes. I am a person who needs to know all the facts. I want to know the sex of my baby and how long their legs are. If there is a test available, I would take it. If the test wasn’t available, then of course I wouldn’t.

No one knows what they are capable of dealing with, what will make them grow, what lessons life will teach them. Nor do you know what joy can be brought to your life by someone like my Moo. She has a wonderful life and she doesn’t know any different. As far as she is concerned, she rocks. She’s right.

Moo was recently diagnosed as autistic. So I started researching it and learning about it. Before she was diagnosed, I had thought “well, as long as she isn’t autistic”. What an idiot. It turns out that I have a heck of a lot of the traits and can completely understand how to help and support her. She may get worse over time, she may not. However, I know that, as long as I believe in her and help her achieve all that she can, she’ll be just fine. It’s not the worst thing in the world.

If we continue to try to eradicate conditions and disabilities from society, like the way that Downs is slowly being weeded out simply because it is very easy to test for, we are weeding out types of people. They are a different kind of person, not a lesser kind of person.  And where will it end? Once Downs is gone, and my heart breaks just at that thought, what is next? Will autism be next? Will we take to weeding out the Leonardo da Vincis, Einsteins, Alan Turings, Bill Gates, Steve Jobs, to name but a few Aspies, from our societies? Just because they think differently and struggle socially.

Why is it that society seems hell bent on eradicating these people, who are only different, not less, instead of working on ways to support and accept them? They offer our society so much. They have special talents and bring out our humanity. The less disabled people there are, the more bigots. Exposure is what educates. We need to educate people to be more accepting,  more supportive, more compassionate. It could start in schools with lessons about the different kinds of people and disabilities so that when those children meet disabled people, they see the people not the disability. When you meet someone like my daughter or her friends, you can’t help but admire and be inspired by them. I fear for a world without them.

Pride doesn’t even begin to cover it.

This morning, I watched an interview between Frank Skinner and Sally Phillips discussing the views of one Peter Singer, a man who believes that humans should not automatically have the right to life and that you should be able to kill severely disabled children up to the age of three. It stunned me. Denmark has actually passed legislation to eradicate Downs Syndrome from their country by 2020. People with Downs are not faulty, they’re not wrong. They are a different kind of people, not a lesser kind of people.

Then I sat down this afternoon to help Moo with her homework. In Literacy, they have been asked to create their own superhero (because that is the kind of kickass cool school my kid goes to). Bearing in mind what Moo has been through and what she struggles with, she could have created a superhero to take away her headaches, to make her brain work better, to help her read or even one that helps her get what she wants.

But that isn’t what she created. My 8, soon to be 9, year old daughter created Friendship Girl. She’s a superhero who flies to the aid of lonely children and helps them to make friends. She wrote:

“Maya started a new school. She felt lonely. Friendship Girl flies to her and helps Maya meet new friends.”

Even if Moo was neurotypical, got 10 A* at GCSE and 3A* in her ‘A’ levels, I don’t think I would be as proud or inspired by her as I am right now. There are some things that education can not teach you. Compassion and kindness are two of them. Moo just aced those.

So Mr Peter Singer, who thinks that some disabled people don’t deserve the right to life, I say to you: spend time with them and watch what they inspire in others. You think they don’t have value but spend some quality time with them, live with them and learn what kindness, compassion, wisdom and strength are. You will be changed for the better, I can assure you.

 

Ladies and gentlemen, we seem to be hitting some turbulence . . .

Man, I don’t seem to be able to post on here regularly. Other things in my life just seem to take over. Or I just haven’t been very disciplined. Take your pick.

How have we been doing in the last eight months? Well, things have been motoring along. Moo’s neurologist describes her medical future as “stormy”. She put that in writing. Basically, we are no longer looking for cures, we are “managing her symptoms”. She is still having TIAs and headaches but they are in clusters and there can be months in between with only low level activity, which makes life increasingly unpredictable and unplannable. Mr G and I have decided not to travel abroad with her for the time being. Walking into a hospital in England, demanding a drip and morphine, is hard enough, never mind with a language barrier and different ways of doing things. It sucks because it means I can’t visit my family in Italy but there we are.

Moo’s last scan showed no changes in her brain structure which is great. However, she is being referred for an Autism Spectrum Disorder assessment as she has some “red flag” behaviours. She was diagnosed with ADHD in June, finally. I’ve been saying that I thought she had it since she was three, before the Moyamoya, but no one took me seriously until the neuropsychologist said that she thought Moo should be assessed. Cue assessment at the age of 8 and diagnosis. Better late than never. Only issue now is finding someone to prescribe her Ritalin to see if it will work. Neuro team have given the ok but community paediatrician is not comfortable. Her paediatrician at the local hospital is happy to do it, love her, but she’s never prescribed it before so needs guidance. It’s going to take ages to get this sorted. Moo on Class A drugs will be an interesting concept. Only reason I am keen to try is that one of the potential side effects is raised blood pressure, which coincidentally could help her Moyamoya.

Reading about Asperger’s as recommended only did two things. Firstly, it confirmed a long held suspicion that I have had that my father has Asperger’s. My father’s life and behaviour is essentially a checklist of the typical behaviour of a man with undiagnosed Asperger’s. Secondly, I have a lot of the traits. I might even be classified as a sub-clinical Aspie. That is to say, I have the traits but not so severely as to be a hindrance to my functioning in life. It was quite the revelation to realise this but also a complete relief. It explained so much about my behaviour and my feelings when I was growing up. I have already been diagnosed with OCD, my father is severely dyslexic while very intelligent. Both of these conditions is co-morbid with ASD, as is ADHD.

In the last week, I’ve also had conversations with Moo’s SENco (Special Educational Needs Co-ordinator) at school. Depending on how she does this year, there is a significant chance that we will have to move her to a special needs school. This has been very hard to come to terms with. You always hope that things will start to resolve themselves but it is becoming increasingly obvious that while the Moyamoya may not have altered her brain structure, it has completely addled her pathways. The gap between her and her peers is widening, socially and emotionally as well as educationally, and it may become too wide by the end of this year. It’s a watch and wait situation. In the meantime, I need to do some research as there isn’t a special needs school suitable for Moo in our area.

Then I’ve become a joint chair of the school’s PTA. It might seem a tad mad when I am already dealing with all of the above, driving a business that I really love forward and trying to find time to write children’s books, but no other bugger was going to stick their hand up and our school is so amazing, in part due to the PTA. No chair of a PTA, no PTA and I just couldn’t let that happen. I did manage to coerce two other people to do it with me and I think we will make an excellent team.

As a result, I was at the Year 3 welcome meeting this morning. A mother comes up to me and says “I’ve seen photos of your daughter at Shooting Star” and my heart just sinks. There’s only one reason a mother would be at Shooting Star House and she goes on to tell me about her beautiful little 18 month old boy who has SMA Type 1. I had to hug her. I know what that means. I love Shooting Star, I love my friends from Shooting Star but I hate it when I meet people out in the real world and they say they saw pictures at Shooting Star. It chips away at my heart that someone else is going through something so awful too. I know we wouldn’t change the children we have and we are truly blessed to have them but it’s an intense bittersweet love that I wouldn’t wish on anyone.

Tomorrow I am taking Moo to GOSH for a video fluoroscopy where they are going to test her swallow. It’s been doing funky things of late. I’m praying it’s nothing and that I am being over cautious but you just never know. I’ve learnt not to have any expectations at all.

Later this afternoon, I’m taking Moo to get her beautiful long brown hair cut into a bob. I feel awful about it. She loves her long hair but she hates it being brushed or washed or tied up. She flips out and won’t stay still. She has to have her hair tied up, otherwise it wraps around her trache and goes down her stoma. It has become such a pressure on our relationship that I managed to convince her to cut it into a bob. If she didn’t have the trache, this wouldn’t be so much of an issue. But then again, she plays with one side so much, it has started to thin so it’s not just the trache. In the great scheme of things, hair isn’t that important but to a small eight year old who wants to have hair like Rapunzel, this is huge. It’s another instance where her medical condition is preventing her from having what she wants. It’s another small bruise to the heart.

So today, I am finding it hard to concentrate on work for all the above reasons. I have a meeting later about the PTA but, in the meantime, I think I’m just going to write about boys who live on the moon and escape from my life, just for a while.

 

2016 will be the year I get myself together, people!

Happy New Year, one and all! Made any resolutions yet? Last year, or was it the year before, I made one resolution to be more mindful. Cue anxious and depressive episode in the summer and my GP sends me on a mindfulness course which changed my life. Resolution accomplished. Just have to keep it up.

So 2016, what resolution have I decided to make this year? I’m not going for the lose weight, get healthy variety. I learned a very long time ago that that is just a waste of time and makes me feel bad when I don’t achieve it. After reading a very, very good blog post on Quartz, I’ve decided to focus on the journey, not the destination. Of course, I’d love to be fit and healthy, but I’m hoping that that will be a happy by product.

So what is my resolution, I hear you ask? Well, it’s to learn to lean into my 4ness, to be more comfortable in it, which means I am going to introduce more structure and more discipline into my life and Moo’s. We will both benefit. After all, she is a type 4 too. I’m determined to help her with her writing and her reading, both of which she is capable of when encouraged.

I bought the biggest, most structured diary too. It’s from Action Day and I got mine from Amazon. There was a smaller option but, in my enthusiasm, I went large. It might be too large to use in my handbag so watch this space to see if I downsize. The layout is phenomenal and it is loaded with advice on how to get more done and succeed. I love it.

Structure and discipline will help me in my new endeavour too. I may have mentioned this before but I’ve finally launched a business selling Forever aloe products. After eight years of being a full time carer, I have found something that I hope can be shaped around my daughter’s needs. I signed up in May, was going to launch in September until depression got in the way and then launched in November just before X Factor took over my life. I have dillied and dallied, dillied and dallied, made excuses, all because, really, I was scared of not succeeding, of not being able to do it again. I launched a business 13 years ago but had one of my best friends at my side. It was hard but we were good at it and succeeded. I wasn’t going out there on my own. This time, I do have an incredibly supportive group of people to lean on but it still involves me getting out there and my confidence is a bit shot. It’s uncomfortable.

And this is where that article comes in. When I ask myself, what would I suffer pain for, I already know the answer. I would suffer pain for my little family. I would love to take the pressure of Mr G as the sole breadwinner. I would love to guarantee a secure financial future for my daughter. I want to be a good role model for her. I’d also love two new bathrooms and a holiday cottage in Portscatho, but let’s start on the truly important first. When I did some training a couple of months ago, they talked about people with hot spots, things that would seriously drive them forward, come what may. Well, I have two very real hot spots, Mr G and Moo.

So I will be going out there this year, I will be (probably) annoying my friends by telling them how wonderful my products are (because they really are, I use half the range already and love, love, love them), I will be talking to complete strangers when I see them struggling if I think I can help their health, I will be introducing people to network marketing to see if I can help them achieve their dreams and I will be a Manager by the end of 2016. I’ll probably meet some lovely people in the process, too.

Another resolution is to put the damn phone down! Yes, I need it to work. Yes, I love Facebook and keeping in touch with people. However, you know it’s time to address the addiction when you find yourself wondering what’s going on in the world and you check bloody Facebook for news. I need to be more present in my life. My real one, not the virtual one. My daughter and my husband deserve that. I also need to slow the hell down when I am not working. I need to pay attention more, improve my mindfulness. I know all the theory now, just have to practice it. I know that Moo has grown up so much in the last year and it’s only going to go faster. (Her teeth, bizarrely, are a reminder of that. Every morning she wakes up and her smile has changed. It’s gone a bit goofy as a big secondary tooth coming through has pushed apart her top two front teeth and left a huge gap. Then one of them is moving forward and loosening before it falls out. She, currently, strongly resembles Goofy.) I need to spend time appreciating who she is now before she develops into a pre-teen, then a teen, then a young adult. It’s all going so fast.

So, quite frankly, I have decided that 2016 is the year I get my shit together. The year that I enjoy the struggles, the challenges, the hurdles, the discipline and the structure because I have my eye on the prize: a more financially secure life for my little family of three and to support my Moo to be the best Moo that she can be.

 

 

X Factor, Shooting Star Chase and the bestie

It’s been a crazy few weeks. I’ve tried to launch a business that I haven’t actually had time to focus on. We’ve been to Disneyland Paris, thanks to the lovely people at Magic Moments. No sooner had we returned home blissfully and thoroughly exhausted on the Wednesday night, then I receive a phone call on Thursday morning asking if we would be the featured family on the X Factor for Shooting Star Chase. Of course, we said “yes”. Not because of the chance to be on telly or the chance to meet the famous judges, although that was fabulous, but simply because when you owe your life to someone, it is a debt that can not be repaid. So essentially, Shooting Star Chase can ask me to do anything and, chances are, I will do it.

I owe my life to Shooting Star Chase. “Owing your life” is a phrase that can be so easily banded about but I actually mean it. The day they rescued us, I had been to the doctors again. When you have mental health issues, there is a lot of paperwork. So I had filled in yet another form, the last question was, and always is, “have you had thoughts about ending your life?”. I ticked “yes”, because I had started planning. Once a planner, always a planner, even when you are suicidal. I rarely do things on the spur of the moment. My doctor clearly saw it. She later admitted that she had so nearly sectioned me but thought separating me from Moo would push me over the edge.  She was right so I sort of owe her my life too.

Shooting Star Chase is a charity, funded by the kindly generosity of the general public. The NHS didn’t save me, the PCT didn’t save me, Social Services didn’t save me although I begged them all for help. Shooting Star Chase did and I didn’t even ask them. They saw someone drowning and threw us a life raft. So I will do anything for them because, out there, is someone like me, drowning, and Shooting Star Chase may be their only life raft. If I don’t raise awareness, if I don’t push everyone I know to donate, they won’t raise the £10 million a year they need to help the 700 families who, like me, completely and utterly rely on them to live a blessed life.

So this is the background to my bestie, Pumpkin, deciding to do something mind-blowing. In April, it will be 30 years since we met and became the best of friends. On the day that Moo was born, she dropped her entire life and rushed to my bedside to be there for me while Moo was driven to Great Ormond Street. She stayed there for two days, not going to work, not being with her beloved; just by my side, talking when I needed to and being silent when I needed to be. She was my rock. And now she is doing something, quite frankly, insane.

Pumpkin has had weight issues all her life. She has also had the morbid fear of the age 43. She was 9 years old when her father dropped dead of a heart attack in the middle of a hockey game at the age of 43. All her life, she has feared this age as she is aware that her fondness for cake and lack of routine exercise could set her up for a repeat performance. Her father was a fit and healthy member of the RAF. She’s not. It’s only a very slim chance but fear doesn’t do logic.

In typical Pumpkin style, she sat, wrapped in fear one day, and thought “Screw this. I can either live through my 43rd year being scared or I can turn it into a year where I do something amazing and turn it into something to remember with pride”. She looked around at what she could do and, for some mind bending reason, decided to do something for her Goddaughter, Moo. She teased me by sending me a text saying:

“I’m doing something that I never, in a million years, thought I would ever do for the only person who would inspire me to do it.”

Then she sent me a link to the Shooting Star Chase marathon team. I screamed. I thought she had lost her mind. When she asked me to help her get a place, I knew she was serious. I double-checked with her that she was absolutely sure. So I spoke to the person I needed to and, hey presto, she got a place. I called her:

“Hey, where are you?”
“I’m in the pub having a burger with my sister.”
“Put the burger down.”
“Why?” in a slightly terrified voice.
“Because you are running the London Marathon and need to eat healthily!” I shouted down the phone, rather excitedly.
“What?” said a very tiny voice.
“You have a place in the London Marathon in April 2016.”

Apparently, when she went and told her husband, he laughed for 30 minutes. Then he bought her a book called ‘Run, Fat Bitch, Run’ which is both highly entertaining and brilliant in aiding her motivation. To recap, this is a woman who didn’t run for the bus, never mind 26.2 miles. She occasionally went to aquafit but that was it. For the first couple of months, when it was a secret, she would sporadically send me texts that simply read “oh, fuck”. I’m not going to lie, I kept thinking the same. But she is feeling the fear and doing it anyway. And has lost 20lbs in the process.

To say that I am proud of this woman would be the biggest understatement of the year. She is completely inspirational, huge of heart and of determination. She is now running for 30 minutes at a time, has knocked 5 minutes off her mile and has already broken even on her fundraising. For every place Shooting Star Chase has in the marathon, they pay £1,000 and all they ask is that their runners raise £2,000. So this is a warning to all my loved and cherished ones, I will be sporadically irritating you with begging letters to ask you to sponsor Pumpkin. I want to help her smash her target. I want to help pay back for the day that Moo was born and she was there with me. I want to help pay back Shooting Star Chase for all that they do for families like mine.

And as an aside, I do not call her Pumpkin because she loves cake and is shorter and a bit rounder than me. I call her Pumpkin because it is one of my favourite fruit, it makes my favourite pie, all sweetness and spice, and it’s very, very good for you. If you could turn people into fruit, she’d be a Pumpkin.

 

 

 

I’m not boring, I’m a Type 4!

A few weeks ago, I had a head to head with Moo on the naughty step that lasted 20 minutes. I looked at her and could see that this was just not working. I’ve never read a parenting book in my life (very type 4 of me) but realised that I had run out of ideas and I just don’t believe in the authoritarian ways of parenting that don’t respect the individuality of the child. So I hit Amazon and came across a parenting book called The Child Whisperer. The reviews were outstanding and the book was stupidly expensive for a book but I bought it anyway because I was desperate. I thought it was a parenting book. I was wrong.

The Child Whisperer is a book written by a woman called Carol Tuttle. Basically, she has been in the self help industry for decades and over the last eleven years has developed a system called Energy Profiling. The idea is that everything on the planet is made up of four elements: oxygen, nitrogen, hydrogen and carbon. Each of these elements have an energy. We are all made up of the four energies but that we lead with a dominant one, followed by a secondary that tempers the dominant. The other two are in the background to be drawn on when needed.

I have always been fascinated by people and what makes them tick. I’ve done the Meyers-Briggs, I’ve read all sorts of articles. I am not alone. Human beings have been trying to suss out personality and what makes us tick since the times of the Ancient Greeks. Here was yet another way of understanding. What has captured me about this is that the last thing you look at is your personality as it is the most malleable of the five components. We are so easily influenced by our parents, our peers and our environment that we can hide parts of ourselves that we feel don’t fit. This system does not set out to tell you who you are but to support you in discovering your true self. This intrigued me.

The Child Whisperer is designed to help you decide which energy type your child is and parent according to that. So I started reading it, thinking it would help me parent Moo. I ended up spending two weeks doing a lot of soul searching and thinking about my past. I ended up parenting myself.

I read through the book, I watched so many videos online. I did the Energy Profiling course. I did the Beauty Profiling course. I followed the Carol Blog. I became obsessed. My husband said it was like I was having an affair with this woman. I found everything out that I could and I still resisted accepting my type. Type 4, the more serious child, screamed at me but it’s all about structure. The very word makes my skin crawl. Seriously, I have a physical reaction to it. And that can not be normal. So I thought back. To figure out your type, you take in so many bits of information. It shows in your face, the way you move, how you process things, it even shows in how you doodle.

The thing is I know who I am. I wasn’t looking for someone to tell me who I am. What I find so fascinating is that this goes deeper than that. It looks at what drives you, what makes you tick, what is your movement through life. I have always had a sense of being misunderstood or not fitting in. Everyone who knows me would say that I am very outgoing, an extrovert, that I make an impression. The fact is that a lot of that behaviour is learnt and it is a self defence mechanism. When you are loud and chatty, people don’t ask questions. After all when you talk so much, you are very open, right? Wrong.

Someone who knew me when I was younger once said, “The thing about you, Brittie, is that when I think of you, I think of you being outgoing and chatty. But when I stop and think about it, I don’t actually know a lot about you.”

Oscar Wilde wrote this line in An Ideal Husband: “a typical politician, he talks more and says less than any man I’ve ever met”. That line has always resonated with me because I identify with it.

I am actually a very private person. I don’t express my feelings to any old person. I have to trust the person I am sharing them with implicitly and I have major issues with trust and vulnerability. Years of counselling still haven’t managed to help me with that. So I can count the number of people I truly trust on one hand. That’s quite sad.

A type 4 movement is still, reflective. A type 1 is a social energy, a type 2 is a sensitive energy, a type 3 is an active/reactive energy (a doer) and a type 4 is an intellectual energy. I think a lot, A LOT. Every decision I’ve ever made has been analysed and logically thought out. I have a very one track mind. If I am doing something, I focus on that. Don’t interrupt me when I am focused, it’s guaranteed to make me snap. So for example, I have many interests but I only ever focus on one at a time. While I have been studying this, I haven’t picked up my crochet in two weeks. I love crochet but this has been my focus.

In trying to fit into my crazy, mad arse, extremely loveable family, dominated by Type 1 and 3 energies, I think I suppressed elements of my nature that did not fit in. Structure is seen as boring, as not fun, so I’ve become conditioned to be very structure averse. And as a child I was very shy. I was called boring. I was told to smile, to lighten up, to not be so serious. As for my smile, I have been told on countless occasions that if I don’t smile, I am very intimidating. Lovely. My friends who are reading this are probably going “What?!?!”. The fact is that I’ve overdeveloped the type 1 element of my nature to cope with the anxiety I feel walking into a room full of strangers. It has never left me. I just learned how to hide it.

There are so many things that this course and information have helped me with but the greatest is this, I am not boring. I did not realise how important this was to me. I am just a Type 4 and there are millions of us. There are millions of people who think like I do, who have very strong opinions and are very bold in their thought processes. There are millions who have a perfecting eye, who can look at a big picture and see where improvements can be made. There are millions who feel really deeply but who have difficulty expressing those feelings, who find crowds of people intimidating and who obsess about things if they don’t understand them or get to the root of them. There are so many other things that I have in common with these other millions. We are all completely different, all completely unique but have these commonalities. I am not alone.

A few years ago, I was having counselling at Shooting Star CHASE. After a lot of sessions, I suddenly had one where I spent the whole time in tears but being really, really quiet. The counsellor asked me why I was crying. “Because this is the real me and I haven’t been here in so, so long and it feels so lovely to be in this space and I’m scared that I won’t be able to maintain it.” She asked me how I felt. “Extremely vulnerable.” As soon as I left the hospice, all my defence mechanisms rocketed into place and I haven’t been able to get back to that space. How strange is that? I struggle to find a way back into my own psyche. The very defence mechanisms that I subconsciously built to protect myself have actually blocked me out too. How screwed up is that?

So I’ve started living more true to my nature. It’s affected my wardrobe. I looked through all the clothes I had and culled the ones that I never wear for one reason or another. It started to make sense. It has helped in my understanding of my husband and my daughter. I now realise that Mr G does things because he is a completely different type to me and can not, will not and never will be able to see things the way I see them because he does not have the same energy as me. It also explains why his leg will suddenly flick out while watching telly or when he gets tired. As a fiery, determined type 3, he needs to move but doesn’t always move enough.

I’ve started being tidier. I’ve started being more structured with my day and how I approach things. Most of all, I finally understand why I need time alone to decompress, why I walk away from confrontation, why I struggle to go to the gym! And I’ve realised that it’s ok if I don’t talk to people, I’m not boring. I just have a more introverted energy. I’m managing my critical eye better, choosing when to share my views rather than doing it all the time. The hardest part is breaking down those defences, to keep my mouth shut when I am around people if I don’t have anything to say. I don’t need to fill the silence. I don’t need to make people laugh. I don’t need to be so in your face. It’s really, really hard to let the real me out but I am getting there.

 

Smoking killed Spock!

Why is tobacco and the consumption of it legal? Of course, I know why. It’s legal because it came onto the market at a time when the medical community and governments didn’t realise how lethal it was and, as we all know, the tobacco industry generate ridiculous amounts of government revenues in taxes.

Imagine if tobacco was a new thing. Can you imagine a company selling a product that has no health benefits whatsoever, is highly addictive, kills two thirds of its users, pollutes the atmosphere and costs the government billions of pounds in healthcare costs, not just for smokers but also those poor passive smokers who are affected? Can you imagine that being allowed?

I am an ex smoker. I understand why people find it so hard to give up. And if you have a stressful lifestyle, smoking is a soothing crutch. It also clogs up your lungs, makes you and those around you smell like an ashtray, costs you hundreds of pounds a year and, every time you take a drag, you are basically choosing to increase the chances of you dying, because, let’s face it, you are more likely to. Smoking cigarettes kills two thirds of those who do it. 66% of people who smoke will die as a result of it.

If you deeply love someone who smokes as I do, this number will terrify you. Smokers are addicted. Addiction is a disease and a bastard of thing to conquer. However, it can be conquered. It just takes a hell of a lot of effort, agonisingly strong will power and the ability to resist the horrific withdrawal. No easy feat. You have to want to do it more than you want the cigarette. You have to be in the right headspace. I sit and wait for my loved one to get there. I live in hope that they will.

Cigarettes are little nuclear bombs all over the place, threatening to detonate and destroy. I live in perpetual fear of ours detonating. I can not imagine life without my loved one. It would be utterly devastating.

Losing a baby in pregnancy . . .

I gave birth to a sleeping Ziggy at 21 weeks and 5 days into my pregnancy. Another 2 weeks and 2 days and he would have been entitled to, in fact required, a birth and death certificate. As it is, there is no legal proof that he ever existed bar the fact that he is buried in a cemetery. But he definitely existed. He changed me forever. I am a better mother because I lost him.

What people don’t tell you is that the loss of a baby in pregnancy never leaves you. The pain of it never diminishes, never decreases. You learn to live with it, that’s all. If you go to that space in your heart, where your baby lives, expect to be seared. So I try not to. However, there is one week in every year that I have no choice because it is the run up to his birthday. I try not to think about him, I keep myself busy, but there is a sleeping volcano in my soul that erupts, without fail, every single year and does not let up. I am in pieces, held together by sheer strength of will. I do not want Moo to feel my pain and I don’t want to bring everyone around me down. Yet inside, I am a mother who is broken, like too many others. Ten years on and it doesn’t lessen, my arms still ache for him. This pain is as intense as the year after he was born and I expect it will be this intense in twenty years too. It is the proof that he lived, that he was loved and cherished and that he lives with me still.

It’s his birthday in a week and I may finally write his story, if my husband is okay with it. It’s pretty intense. If you know someone who has lost a baby, give them a hug, send them a note or a text or an email. Even if you have the most extraordinary rainbow baby, the loss of an angel never fades.

 

Three “parent” babies . . .

So the MPs voted in favour of three “parent” babies and the whole thing makes me very uneasy. Don’t get me wrong, I completely understand why people have been campaigning for this and I really hope that I do not offend anyone with this post. Mitochondrial disease is an absolute horror. I have witnessed the destruction and heartbreak it wreaks first hand. I would not wish that on anyone. I fully empathise with them. I feel the same way about a myriad of other life limiting and life threatening conditions. Anyone who has spent a lot of time in a children’s hospice does. However, the idea of a baby made up from three people’s DNA does not settle well with me. There is no other description, it makes me very uneasy. Let me explain.

Firstly, I know what it is to desperately yearn for a baby. It took five very long and painful years and failed fertility treatment to have Moo. There is nothing like the heartache that infertility can cause. It literally tears you apart with yearning. It’s agony.

Secondly, I know what it is to find out that you have a devastating genetic disorder. I lost Ziggy because I have OS-CS and passed it to him. My variant is lethal in boys. My daughter’s tenuous grip on life is the direct result of the disorder. There is no guilt quite like the irrational one that consumes a mother who carries a deadly gene.

Thirdly, I wholeheartedly support IVF, pre genetic diagnosis (PGD) and ICSI. These medical advances have helped millions of women have the children they yearn for. I realise they are not natural and, without them, these families would not be created. PGD, by definition, filters healthy embryos from unhealthy ones and would have been my port of call had I not got pregnant with Moo naturally.

Here’s where I have a problem. Those medical procedures still rely on nature taking its course. It is still down to one woman’s egg being fertilised by one man’s sperm. When you start taking eggs from two women and mixing bits, it is no longer nature taking its course. It’s a man made embryo and that just can’t be good.

It shouldn’t be about “giving people a choice of how to build their family”. There are already plenty of choices. Parenthood has never been and should never be a right. It seems that people seem to think that having children is a right, not a blessing. The thing with blessings is that not everyone is blessed and those that are should look at the miracles they have and be utterly grateful for them. The thing with rights is that people take them for granted.

What would you tell the child? Would you tell them? I find it hard to imagine keeping a secret like that from any child but how would it make them feel? “Mummy and Daddy made you with a little extra bit from another lady.” That would be one heck of a conversation.

Then there are cases like me. I am what is called a spontaneous genetic mutation. My OS-CS could not have been prevented. When I got pregnant, like a lot of mothers carrying the faulty mitochondrial gene, I had no idea that I had it. Not only that, but when I got pregnant both times, the gene had not been discovered so my babies couldn’t be tested for it anyway.

Imagine going through the hell of IVF, this three parent baby procedure, getting pregnant, breathing a sigh of relief, only to be devastated when something else is diagnosed? You just can’t bombproof conception. No one is immune from things going wrong, even when you’ve been through hell to get there.

I would have walked through all manner of fire to have a baby. I would have done just about anything. I was waiting for approval for sex selection when I fell pregnant with Moo. Girls were meant to mildly affected by OS-CS (HA!) so they were a safer choice. I was approved but already pregnant with a girl. Had PGD not worked, I would have tried donor eggs, then maybe surrogacy, because I knew that my husband was resistant to adoption. There were options. I get that people don’t want to use donor eggs, they don’t want to use a surrogate, they don’t want to adopt, but, to those people, I would ask do you really want to be a parent? Being a parent isn’t just about passing your genes down the line; it’s about the job you do, the love and care that you give, it’s about cherishing another human being and helping them find their place in the world. Using donor eggs still involves pregnancy and the miracle of birth, if that’s what you crave. Embryos created from donor eggs are influenced by what you eat, how you feel, just like any other baby. They would not survive without your care.

As for us, I found that I couldn’t have children. My two pregnancies were miracles in themselves. There are other options for getting pregnant or having another child but I just don’t yearn for a baby the way I once did and I think all children should be yearned for like that. I fully appreciate the strong willed, funny, loving, complicated miracle that I was blessed with every single day.

The thing about all these terrifying conditions and the agony they cause is that, in the most horrific way and in the great scheme of things, we need them. The human race is a great mammalian weed and these disorders controls the population. Not only that, but it also forces us to look inward, at our lives, and feel utterly blessed. I would not wish the pain of a life limiting condition on anyone, least of all an innocent baby, but mixing DNA between three people just isn’t right, no matter how small the third contribution is.

The thing is that no one knows what the future brings and when Man starts messing with the natural process of things, I get very uneasy. You can’t design a baby, that term is just ridiculous, but as someone who is genetically imperfect, the idea that you can swap one woman’s unhealthy gene with another’s just makes me quiver with unease. Once you cross that line, where it could lead, with the wrong people in charge, is quite scary.