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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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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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I am seriously nuts . . .

. . . on so many levels. Firstly, who goes ahead with a kitchen extension when they know that their child with a tracheostomy is going to have serious neuro surgery? Secondly, Moo is going to be seven. She’s had a tracheostomy since day one. I am on Facebook so much that friends refer to it as Brittiebook. Yet, I have never once thought to join a support group for parents of children with tracheostomies. And I do love a support group. As a rather extreme extrovert, the need to connect with other people is very, very strong. Annoyingly so, some might say. Thirdly, this level of stubbornness and bloody mindedness just can not be normal. Fourthly, at some point in the near future, I have got to deal with my issues with vulnerability. I mean, how can I write about my innermost thoughts and send it out into the ether on this blog but, yet, put me in front of a real life human being and I clam up like a, well, clam?

One thing at a time. First, the kitchen. So, when we moved into our house last year, both Mr G and I said from the beginning we were going to have to extend the kitchen. The house is beautiful but it still has its original floor plan which means that it’s not brilliant for entertaining a group of people. As a passionate cook, I have always dreamt of designing my own kitchen but never thought it was a possibility until this house. We discussed having it done in the new year and, as I am such a proactive planner, I started getting quotes as I knew that the lead time may be long. Then, fatefully, someone mentioned that I had enough time to get it done before Christmas. Well, that was it. The idea of Christmas in a new kitchen, having struggled to manage it in the old one, was too tempting and I went hell for leather to make sure it could happen. I still didn’t have to go ahead with it but I did, even though by this point we knew that Moo’s EC-IC last year hadn’t worked and that the Moyamoya had spread to the right hemisphere which meant another op before Christmas. My problem is that once on a roll, it’s really hard to stop me. I think I can achieve anything. That’s how I ended up having a baby in the first place, against all the odds. This attitude has helped me so much in the past and it means that things get done, even in the face of insurmountable odds. It does also mean that I can push myself to my limits and be blind to how much I’ve taken on. There is also the very real fact that had I not had the stress of organising a build, I would have spent all my time thinking about Moo’s impending operation and that, quite frankly, could have sent me into a severe depression. As it was, the anxiety didn’t hit until the Wednesday before. So day one of the build comes along and I have explained to the head guy, who is brilliant, that Moo has a trache and dust is a real issue for her, like a life threatening issue. I’m all relaxed . . .  until I walk out of the living room to find dust billowing down the corridor as they are smashing concrete with both the back and kitchen doors open. The head guy wasn’t there, to be fair to him, and he gets on the case pretty pronto. Panic stations! I freak, they apologise and I take Moo to her music therapy session at Shooting Star House, where the therapist takes one look at my face and asks what’s wrong. Cue Shooting Star morphing into the big brave knight that they are and coming to my rescue  . . . again. We have essentially decamped here until the dust settles, literally, which I hope will be the end of this week. There’s still at least another three to four weeks of the build to go. That in itself has been a bit of a blessing as Moo’s recovery has been somewhat slower than anticipated. I keep having to focus on the fact that at the end of this, we will have a beautiful kitchen and we can start next year with a clean slate. No builds, no major ops, all we’ll have to deal with is the MRI and angio to tell us whether the op has worked, which, quite frankly, is shit a brick terrifying in itself, simply because the last one, with its 95% success rate, did not do anything. We won’t even go into the fact that next year is an odd year and, as yet, I haven’t had a good odd year in ten years. (2005, lose Ziggy; 2007, nearly lose Moo in pregnancy, 9 weeks labour only to be told she was going to die, tracheostomy and seriously ill; 2009, MLB confirms that trache likely to be more long term thing; 2011 beloved mother in law dies from pancreatic cancer; 2013 Moo diagnosed with Moyamoya . . . ) So, yeah, I was a bit nuts to start a build now but there are positives to be had. I may, however, agree with Mr G now and hold off on the dog.

Now onto the support group. There is a very real, clear reason why I have not joined a support group or a charity supporting children with traches. OS-CS is so rare and Moo’s need for a trache is so unclear that it felt like I was on this journey by myself, really. Yes, she has a trache and that is common denominator but the reason why is a mystery and, invariably, that is what I would have been looking for; someone to tell me why she had one, when it would come out and how we would manage. As it was, my support found me. I have a lovely friend, now, in the US with OS-CS who has also passed it onto her daughter and they both have traches. She tracked me down because I once did an interview on behalf of St George’s when the gene was found. Her support has been invaluable and so cherished that she negated the need for anyone else. Of course, now, six years on, I realise that my experience with Moo, of her trache, her gastrostomy, getting her off of her gastro, her speech disorder, inability to drink sufficiently; all these things are useful experience that I can share with others. I’ve been a little bit self absorbed. I met a set of parents at Shooting Star with a little boy with a trache and no leak, who can’t speak, and saw in them the feelings I once had of needing to see a child beyond their little boy’s stage. I had a need to see that it was all doable, that life would be manageable and that my child would be able to have a life full of joy, wonder and adventure, even with a trache, that we could be normal. So they asked for me to be added to the group, as it is a closed, highly supervised group, and now I get the opportunity to be my friend, to be able to share my experiences and, hopefully, help others the way that I was helped. I get to pay it forward and that feels rather fantastic. Just like how I believe that we had to endure and go through all that we have been through so that we could make our contribution to the human race by being instrumental in finding the OS-CS gene. I feel rather grateful for my life again.

As a result of that group, I’ve “met” a couple of parents with children with OS-CS. This has just spurred me on to make sure that I write the page about OS-CS. I’ve got the info in genetics speak, just need to translate it and run it by my geneticist. That may take a little time but it is now on my urgent list.

As for the third and fourth issues, I think only a qualified therapist can help me there. We all have our foibles. No one is perfect. We are all, actually, quite perfect in our imperfections. Some of us just have a bit more work to do to be comfortable with that.

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By the grace of God . . .

Now, I’m not one to force my religious views on anyone. Each to their own, I say. However, my mother posted a comment on my Facebook page that triggered a thought in me and I thought I’d share. She commented that she finds it hard to maintain her faith at times like these, referring to Moo’s test results.

It made me think. I am what might be called an agnostic when it comes to religion. Don’t get me wrong, I have an undeniable, unshakeable belief in God. It’s just religion I have an issue with. I was born into the Catholic church. Something I have held dear all my life, not because I was raised in the church. I most definitely wasn’t. Being Catholic was important to me because it is a part of my cultural heritage. My mother is from the Seychelles, a Catholic country, therefore it was a part of her and, as a result, a part of me. So deeply held was this affection that I was quite shocked and horrified when I found out that I had accidentally excommunicated myself by marrying outside of the church without my Bishop’s blessing. Having not been raised in the church, I didn’t know that I needed it.

Religion is basically another man’s way of telling you how to maintain your relationship with God. It’s rules and regulations that govern what you do and, if you do differently, you are doing it wrong. It’s the basis of most of the discord in the world and has resulted in countless pointless deaths, just because one person chooses to follow one religion’s guidance over another. Somehow, the fundamental principles of love, forgiveness and acceptance get lost. Your relationship with God is personal. It’s between you and Him. Who am I or any other to tell you how to maintain that? No one has the right to criticise my marriage except my husband or me. A relationship is between two people and is for those two people to run. It’s the same with God.

As for who God is to me, He is the rock that I lean on everyday, the best friend that I talk to, the Spirit that guides me. You may have gathered that I don’t go to church. Yet, every day, I acknowledge that my life is full of the blessings and miracles that God has granted me. Moo is one of them. Her test results were awful, unbelievably painful to conceive of, and yet, not once did I blame God. It’s not His fault. If it weren’t for Him, she would not be here at all. She died for six minutes on the day she was born. If nature had had its way, she would never have survived her birth. It is only by the grace of God that she is here today. I had nurses and doctors completely shocked and perplexed by her survival, telling me that it was impossible, that they don’t know how she did it. I know how. It was a combination of that little girl’s indomitable spirit and God holding her tightly.

People forget that we live on a planet with limited resources and that human beings are, essentially, a mammalian weed, taking over and slowly destroying the planet we live on. Animals and plants are going extinct, while we grow palm oil to make peanut butter smoother. Rainforests are being torn down, so we can have bigger houses, more land for cattle. Endangered animals are hunted down just for the fun of it. It’s barbaric. There has to be some control on the growth of the human population and nature does this with genetic tinkering. Not everyone can live to be 100. It’s heartbreaking when it impacts you but there is no other way. So yes, I could sit all day wondering “why her?” but, equally, “why not?”. It’s just the way it has to be, for someone. There is no one to blame. That would just be a waste of energy. I’d rather use my energy to love and appreciate who and what I have in my life.

So, yes, my life has some horribly painful elements to it but it also has a lot of joy and light and blessings and miracles. It has wonderful, loving friends and family. It has sunshine and showers, rainbows and puddles. It has laughter, a lot of laughter, and a few tears. It is rich beyond measure. But most of all, it has Moo, my joy and my reason for being. And for that, I thank God.

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And the hits just keep on coming . . .

Two weeks ago, Moo and I spent three nights on Koala Ward at Great Ormond Street. It was a significant stay. She had an angiogram one day and an MRI the next to see if the EC-IC (extra cranial to intracranial, sometimes called an STA-MCA) bypass she had done in August had been successful. Moo seems to sail through surgeries but give her an angio and it’s hell. Last year, she had a 5% chance of reacting to it and proceeded to be completely paralysed down the right side of her body for four hours. This year, she woke up ok but was struck by crippling headaches from 7.20pm until 6.20am. Broken sleep, shrieking in pain, vomiting, it was all going on. So we stayed an extra night after the MRI to make sure two GAs back to back didn’t muller her.

The surgery has a 90% success rate. I went to Great Ormond Street on Thursday to get the results. When doctors won’t give you the results over the phone but ask you to come in to look at imagery, you know you are in for a rough ride. All they had told me in advance was that there was nothing untoward. I knew they were lying. I decided that meant that they hadn’t found a tumour.

The best news they could give me was that she has not had a stroke and the left side of her brain “seems to have stabilised”. The operation itself failed. It did not work at all. She still has a compromised left hemisphere with very little blood flow. On top of that, she has developed Moyamoya in her right hemisphere. In a year, it’s gone from healthy to compromised as the blood is not getting everywhere it did. She also has three little areas in her blood vessels where it looks like little balloons but they don’t know what is causing that. They may or may not be aneurysms or it could be that the vessel feeding into that bit is so narrow that it makes the “normal” part look like a balloon. The right side is providing some blood flow to the left so we need to stem the Moyamoya on that side before we do anything to the left. Her arteries in her brain are odd too. Apparently, they are not as wiggly as they should be and are a bit too straight. The EC-IC didn’t work so there is no point doing it on the right side. They think the best way forward is to do burr hole surgery to increase the blood flow. They drill holes all around the skull to encourage blood flow but the fact that she has a thick skull, thanks to the OS-CS, makes it more tricky. They could make things worse rather than better but if we leave it, she’ll have an oxygen starved brain, suffer a brain injury or worse and that would be insane. It explains why she has suddenly been having a lot of headaches. I reckon we’ve got about four months until she starts having serious TIAs on the left regularly and we want to avoid that. When Moo first had TIAs on the right after her left side of her brain was affected, they were severe. She ended up in ICU at one point because she developed waking apnoea where we had to remind her to breathe. Not only that but the TIAs addle her brain and she lost a lot of skills that she had worked so hard to achieve. Now it’s about to happen all over again.

Going home and telling my husband all of this was heartbreaking. He had no idea. As usual, I knew all along that the surgery hadn’t worked. My understanding of Moo is on an almost psychic level. There had been too much Moyamoya activity for it to have worked. However, those around me, including Mr G, assumed that because her TIAs were less severe and not as frequent, it would be good news. They didn’t take into account how often she blanched, word searched, slurred, how tired she could get. Those were the signs I was looking at. The news about the right hemisphere completely blind sided me. I knew she would develop it at some point but I thought we were years away from that.

They will do the surgery on the right first in September, hopefully, and then look to do it on the left. The left is more difficult because she has already had neuro surgery there. But they can’t tell us what the chances of success are or the prognosis because they said they are in uncharted territory. They’ve never seen a patient like Moo. It’s all an educated guess.

My greatest fear in all this is that Moo suffers a brain injury and starts to lose some of her ‘Mooness’, if that makes sense. Since the day she was born, our focus has been on quality of life. We want her to have the fullest, funnest life possible. She is such a character, so funny, loving, bright in her own way, infuriating, down right rude sometimes. She is Moo.

What do I wish for now? That they save her, no matter what? After the shock wore off and I was in bits, I sat and talked it out with our neuro nurse. If we are in uncharted territory, and things are not looking great, as a her Mummy, what do I hope? I don’t want her to suffer a severe brain injury and lose who she is, just so that I don’t have to say goodbye to her. I don’t want her to die either, obviously. It’s like being stuck in the most hellish no man’s land where no one can tell you what the future holds. For a control freak planner like me, it’s unbearably terrifying.

So I’ve decided not to think about it. At all. We are having an extension built as planned. I’ll focus on my dream kitchen. I’ve contacted the breeder that I want to buy a puppy from and found that she hopes to have puppies at Christmas time, which is perfect timing for us. We are going live life full blast and enjoy every moment.

People naturally want to reassure me, tell me to think positively, that everything will work out for the best. I would say to those people, please don’t. That’s not empathy. That doesn’t help me. You don’t know what the future holds. I don’t. I don’t want platitudes. Platitudes will wind me up. What I need is what my best mate gave me, a text back that said “Fuckety, fuckety fuck. Gutted. xxx” Then let’s plough on.

We have never focused our life around Moo’s health issues. We focus it around who she is and what she needs. She’s six. She needs love, boundaries, guidance and a lot of fun. So that is what she is going to get.