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Happy New Year, one and all.

I hope you have all had a lovely festive season and were fortunate enough not to have had a panic inducing weight gain like I had. These things happen and, armed with my new trusty Fitbit Charge HR 2 and a photo of the current state of my stomach, I shall be back to my svelte self within a month.

I wish that this could be a happy post but, alas, I am upset again. I recently started following The Mighty which I highly, highly recommend. It is such a wonderful site, dedicated to encouraging understanding and support on a range of issues to do with health. The tagline “We face disability, disease and mental illness together” just about sums it up. Even if you do not have to deal with these issues, reading the articles written by those touched by it can only help to breed understanding and inclusion. There are also great articles on how to help people in those situations as well as ones of gratitude to those who have unwittingly made a huge difference. I, myself, have learned so much.

This morning, on my Facebook page, there was an article that started with the line “I’m Only Having One Child Because of My Mental Illness – and That’s OK“. The title was enough to set me off. I read the article out of curiosity but I was already feeling my high horse riding into view and my legs were getting jumpy. Quite frankly, why is this woman feeling like she has to write this article? I’ll tell you why: because when you say you are only having one child, some people will try to convince you otherwise or give you a strange look like you are causing your child harm by making her or him a singleton. I should know. I’ve had that conversation with people. Short of saying “well, if you hit perfection the first time, there’s no need to try again”, I tried to be polite. Most people assume that the reason we didn’t have another child is because of Moo’s medical issues but if I really wanted a second child, that wouldn’t have stopped me.

I did look into egg donation and ended up having a conversation with someone who asked the one question that I don’t think gets asked enough: “do you want a second child the way you wanted a first?”. For me, the answer was no. I wanted another child because I couldn’t imagine what being an only child would be like. I couldn’t imagine a life without my sister or brother. I wanted my daughter to have that kind of relationship. As was pointed out to me, you can’t force a close bond between siblings and I know too many cases where siblings are not in touch because they just don’t get on or have nothing in common. Having another child as a playmate for the first is not a reason to bring a child into the world. Every child deserves to be desired the way I desired my first. I was utterly driven in my need for a baby. I would have walked over hot coals, I would have tried everything to have her or I would have adopted. I was desperate to be a mother and have a baby. Turns out that once I had her, I didn’t need or really want another.

I have a dear friend who went through hell to have her first child and then, subsequently, had a very similar hellish experience in her quest to have a second. I remember talking to her and asking her “why are you doing this? Why are you putting yourself through all this heartbreak and heartache?”. Her answer was “because I want a second baby the way I wanted the first. I am aching for one”. When she said that, I had two thoughts: 1) “well, then, I have your back.” and 2) “oh, thank God, I don’t feel like that!” Thankfully, she went onto have the cutest little boy and her family is complete.

The fact of the matter is that the size of one’s family is no one else’s business. Why do people think they have the right to condemn such an intimate decision? You know what, couples who decide not to have children are not going to regret it later. I bet they took making that decision very seriously. I admire people who decide not to have children. They know what they want in their life and kids are not it. At least, they aren’t bowing down to the pressure society seems to put on people and having unwanted, unhappy kids.

As for only children, it might shock people to know only children are not lonely children. It depends on the parenting. That deeply entrenched belief in society is based on research that took place at the end of the 19th century and has been disproven over and over again. Research has proven that only children do equally well in social situations and education, if not better. And one of the reasons is because they often have a stronger self esteem, which in today’s society is somewhat key to survival. If you don’t believe me, I highly recommend you read this book which gives a very balanced view of being and raising an only child: Parenting An Only Child. The author has spent over a decade studying only children and has raised one herself.

So the message here is the size of someone else’s family is none of our business and we should not condemn them for their decision of how many people to bring into the world. Being an only child is not torture. These children do not suffer as a result of no siblings. For a start, they have no sibling rivalry to contend with. Childless couples may or may not have had a choice as to whether they had children but their lives are not any less rich than those of us with kids.

And, yes, when I found out that a friend was going to have her fifth boy, I did think “oh my word! Has she lost her mind?!” but that was a reaction based on my experience of parenthood and how hard I find it. She, on the other hand, clearly relishes it and wants a big family. Good on her. Each to their own. And I swear that she’s one of the most beautiful pregnant people. This is her fifth! By rights, she should look like a big bloater with puffy ankles and the works, but no. She’s positively glowing with a nice tidy little bump. Post Christmas, I look more pregnant that she does and she’s due in March!

 

 

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Words, words, words . . .

Yesterday, I got annoyed. Nothing surprising there. I jumped up onto my high horse and took a ride. What annoyed me were memes being posted regarding Christmas. After what has gone on this year, it was the last straw on my haystack of annoying memes that I have seen this year. I posted on Facebook about it and set off a discussion about who we should and should not be wishing a Merry Christmas to although that is not what my point was meant to be about, nor did I intend for people to immediately start defending their faiths although it did accurately prove how powerful a meme can be and how fast a point can be misunderstood and swept away. A few people said that I should just focus on the sentiment behind the message and that is when I started thinking. Should I just focus on the sentiment? Isn’t that the problem?

See, the thing is words have power. They are not just semantics. They can be used as weapons. Just ask any mother whose child says they hate them if that didn’t sting despite knowing that their child didn’t mean it. We read a meme, emotionally connect with it and immediately share it. The people that share the memes that annoyed me are good, loving people. They wouldn’t mean harm to anyone and they are definitely not in any way meaning to disrespect another person’s beliefs. I know that so why am I still irritated? (And to be very clear, I am annoyed by the memes, not the people sharing them.) As my mother pointed out, these memes have been around for years. It’s not just religious memes; it’s political ones, it’s activist ones, it’s all of them. I’ll tell you why I am still irritated, because there is a very big difference between:

“Share if you believe that Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays.”

and

“Share if you believe that Christmas is about celebrating Christ and wish everyone a Merry Christmas or Season’s Greetings, depending on their beliefs.”

The first has a tone of condemnation if you don’t do their bidding (the word ‘should’ should be banned from the English language) and the second is more inclusive of those who don’t share the same faith. “Why is this so important to you?”, you might ask.

I won’t go into every reason why this is important to me but here is the headline. Your subconscious is listening to everything you say, read or do. It hears words. It does not judge the words as right or wrong, good or bad. It just hears them and embeds them into your belief system. So if you shout “I am enough” over and over again, you’ll find that your self esteem will raise simply because your subconscious is listening and says “ok, I am enough”. Sounds very simplistic but is amazingly effective. I should know, I’ve been controlling my depression and anxiety with that simple phrase for the last nine months. I’ve also been telling myself that “I have phenomenal coping skills”.  It works. I’m coping a lot better than I have in years and I don’t feel so overwhelmed so easily. (Thank you, Marisa Peer.)  The same works if you use the phrase “I want, I love, I enjoy” even if you don’t. Eventually, your subconscious will go “ok, I want, I love, I enjoy . . . ” and you do.

So, if you read a meme or article that emotionally connects with you, but don’t pay attention to the way it is worded or what it could be really saying, you are planting tiny seeds into your subconscious that you may not intend to or even be aware of. In your conscious mind, you are thinking “yes! I believe that Christmas is about Christ”. Your subconscious hears “Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays”. There is a divisive tone to what your subconscious hears. In the worst case scenario, one day, some demagogue comes along and starts to play with all those tiny seedlings that you don’t even know are there and, before you know it, you are voting for someone who you would never have voted for before. Some good, honest, intelligent people voted for Donald Trump, after all.

There are so many memes and articles bouncing around the internet and we share them because they resonate with us but we really must pay attention to how they are written, what they are really saying. They seem harmless but we need to be careful. When you see things like these over and over again, they can have an insidious effect without us even knowing about it. On the face of it, an article about a troll being put in their place appeals to our sense of justice and makes us feel vindicated but, when you stop and think about it, it is really an article about a bully being bullied. That’s not right.

Are they written in a tone of kindness, of inclusion? Feel free to share those bad boys. Could they be perceived as divisive, condemning, “I’m right, you’re wrong”? Stop those in their tracks. We don’t need “them” and “us”. Different does not mean less. I won’t even share a meme that says “Share if you think Donald Trump is an idiot” because that is essentially mass trolling. For the record, Donald Trump is not an idiot, he’s very clever in an extremely narcissistic way. He may be a misogynistic, racist bully but he’s not an idiot.

We must pay attention to the words we use and share. I never really thought about it until this year when I started to wonder how did we get to where we are. Words are how we communicate, how we express ourselves. They are the only tools we have to show who we really are and what we believe in. If we use kindness as our base line for all communication, then we should be able to communicate anything, including our faith, our beliefs, our stories. For the record, I love to hear about my friends’ and family’s beliefs, faiths and what they are doing. It’s who they are. The more we share and listen to with an open mind, the more we can understand. Understanding can lead to respect, tolerance and inclusion and that has got to be a good thing.

 

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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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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.

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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.

 

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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.