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Being Harry Potter . . .

I was reading that JK Rowling fell off the billionaires’ list because she gave too much of her money away to charities. Good woman. It triggered a thought in me. Without meaning to trivialize the struggles, having a child with complex medical conditions or special needs is a bit like being Harry Potter in a world full of muggles. You get by the best that you can but your difference makes you feel a little bit isolated, a little bit disconnected, a little bit battered by life. You fight your own personal Voldemort on a daily basis, whether that is just trying to keep your kid healthy, trying to get them the best support you can or, often in hospital, just getting the doctors to put their egos aside and listen to you. Sometimes, it’s not letting everything get on top of you and push you into a dark hole. Sometimes, the battle is just trying to figure out whether your child is genuinely having a crisis or being a typical 9 year old and trying to pull a sickie. (Just got called to pick her up from school. Apparently, not a sickie.)

Then you go to somewhere like Shooting Star House or Christopher’s and, all of a sudden, you are in Hogwarts. Everyone understands. Everyone is different. These are people who fundamentally get what you deal with, even though their battles are different, even though their Voldemorts are different. Here, your child is normal. Here, everyone is magic. Here, you won’t get platitudes. Here, you won’t get “I don’t know how you cope” or “I couldn’t deal with what you deal with” or “I think you are amazing”. These comments are meant to make you feel good and you appreciate the kindness behind them but they still irritate. What else are you supposed to do? You are not superhuman, you are just a parent, like them. Here, a concern is not dismissed as something any child goes through.  At Shooting Star/Christopher’s/Hogwarts, we get to chat, play, relax, bond in an environment where we are not different in any way. You can’t underestimate the restorative power of that.

Parents of children like mine are so blessed, even though, unlike Harry, we don’t have a magic wand. It’s not an easy life, by any stretch. It takes a long time to grieve for the child you thought you were going to have. It takes a long time to come to terms with the hand that your child has been dealt. In my case, I’ve been through those processes over and over again. I anticipate having to go through them again. It’s like living as if you stand on quicksand, all day every day. Each time you go through those painful times, you can come to a place on the other side where you are eternally grateful, even though the knocks keep coming. It takes a conscious effort, a conscious decision not to get angry, bitter and twisted about it all. These children teach us so much and enrich our lives in a way that cannot be described. We live in an alternate universe, where there is much pain and suffering but, equally, there is much more joy and gratitude. It’s a life of extremes. The smallest achievement is huge. There are so many celebrations. The superficial is irrelevant. You learn to let go of the small irritants of life and focus on what is really important because we know it can be snatched away in the blink of an eye.

This is not to say that people without special needs kids don’t know what is important in life. It’s not to say that they don’t know how precious life is. They just know it in the way that we all know that one day we are going to die. It’s something we know but it’s far off and not thought about because it’s not imminent. It’s something on the distant horizon that does not need to be considered regularly. It’s the way that some people live their life in a way that endangers their health and greatly increases the chances of them dying prematurely but, until someone says to them, “If you don’t change X or give up X, you will be dead in six months”, they won’t do anything about it. Or it’s the way they read a meme that says “live each day as if it’s your last” and say “so true”, then carry on life as normal, even if they are not happy with said life.

How can I get frustrated that the window sill in my kitchen isn’t perfectly level or that the boiler doesn’t fit my cupboard perfectly, things that would have driven me crazy ten years ago, when my daughter could drop dead of a stroke at any minute?  I don’t like to think about it but it certainly gives you perspective. I’ve probably gone too far the other way. It’s hard to get stressed about things these days. ‘Things’ being the operative word. People and pets are worth the energy; things, not so much.

This is the life I lead, I didn’t choose it but I wouldn’t have it any other way. It’s really hard. So yes, I’d compare having a child like mine to being Harry Potter. Harry Potter could perform magic and walked around in a world of people who couldn’t, people who didn’t even know of Voldemort’s existence. Moo is a walking miracle, she IS magic and I am so very grateful to be able to walk in her world and the world of kids like her. I kind of feel sad that not everyone can personally experience what it’s like to have a special needs child and  its beautiful bittersweet wonder.

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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.

3-1-7

Worth the effort/breakdown.

 

 

 

 

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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.

 

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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.

 

 

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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.

 

 

 

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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.

 

 

 

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Happy New Year, one and all!

My New Year’s resolution was to be more mindful. I’m managing that, just. My other one was to write more often. It’s 22 January and this is the first time I’ve managed it. Not managing that one, clearly. Got to become more disciplined on that one. Maybe just a little bit more mindful . . .

I posted on Facebook a comment about my hair. I’m currently sporting a chin length bob, the longest it’s been since Moo was born. And it is annoying the pants off of me. However, everyone keeps saying how nice it is and how it has knocked 10 years off me. One friend even went so far as to say that I looked 12. I’m sitting here pondering why that is such a good thing? Obviously, I took these comments as the compliments they were meant to be but why is looking so much younger than I am such a good thing?

Why is it that everyone wants to look 10 years younger or younger at all for that matter? Why is it not okay to look our age? Who decided that? Why is it that every time I try to grow out my greys, everyone I know recoils in horror at the thought and does not hold back from trying to discourage me? It’s almost as if they think it’s contagious. If one person grows out their grey, then another might do it, then another and who knows where it will all end. It’s not a disease, it’s grey hair.

It’s a bit like shampoo. Shampoo has only be around for 100 or so years. It was only in the sixties that people were recommended to wash their hair more than every two weeks. Advice that was driven by the burgeoning beauty industry who were making billions of dollars while they encouraged us more and more. The fact that you can wash your hair with a load of other, natural alternatives as opposed to a bottle of detergent is never mentioned, of course.

I’ve had 42 incredible, amazing years of life. Jam packed with love, laughter, tears, sadness, trauma, adventure, hard work, heartbreak, risks, excitement, all that life has to throw at you. Why can’t I look my age and be proud of it without all and sundry telling me that’s wrong? Why do people fear getting older so much when it is such a gift? I just don’t get it. If it’s driven by a fear of approaching death, well, no one wants to die but, equally, there are so many who have not had the chance to live as long as I have. Surely, in trying to look younger, dress younger, be younger, are we not denying the years that we have been blessed with? I’m sure my lovely friends, Pippa and Duncan, would have loved the chance to be 42 and be proud of it. Alas, they were killed in a horse riding and car accident respectively before they could.

Don’t get me wrong. I don’t want to look haggard and tired, like an old witch. I love make up, glamming up, as much as the next girl. However, to me, that’s about looking the best version of the 42 year old me that I can. God knows, I don’t want to look older than I am. Who the heck wants to do that?! I’m not that much of a freak. I’ll happily look 50 when I am actually 50. As for dying my hair, I get bored. I get bored of brown, of red, of purple. I have the attention span of a gnat so I dye my hair to shake things up. In doing that, I do end up dying my greys which then proves difficult to grow out again. I don’t like roots. Not because they show that I have grey hair, I don’t care about that, but because being me, they make my hair look unfinished, incomplete. I can’t stand not finishing something that I’ve started. I like having all in one colour hair, I like having brown hair with grey streaks; I do not like having half and half. It looks weird.

Am I the only one who doesn’t care about getting older and looking it? The only reason age bothers me is because my long sight is deteriorating rapidly and I ache in places I never used to but that’s what happens as you age. So what? I’m still relatively healthy. I just want to look like the 42 year old mutant, mother, wife that I am. What is so wrong with that?

I’ve got a good mind to chop my hair off and grow out my greys . . . but then I’d have to deal with all the negative feedback (my mother would go ape) and that really does put me off. I sit here thinking all of this and, yet, find myself reluctantly playing along to avoid all the aggro. Coward. No one’s perfect. Ugh.