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.

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.

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.

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.

 

Live to eat or eat to live . . .

I’m reading The Body Book by Cameron Diaz on a dear, trusted friend’s recommendation. My first reaction was “why would I read a book about the body by Cameron Diaz, the actress and model and basic epitome of bouncy happiness? What does she know?”. My second thought was “now that was a very bitchy, judgmental thought.”

I have a close friend who we’ll call Monsieur du Sel (he’ll love that) who is an economist. His great passion, however, is photography. He has studied it in great detail and gets up at ridiculous hours to take landscapes. Now, just because he’s an economist, does that mean I wouldn’t listen to any advice he could give me on photography? Absolutely not. So why wouldn’t I read a book about the body by Cameron Diaz? She is a successful actress, which has bought her great fame and fortune, but, it turns out that her great passion is the human body and how it functions. And she has studied. Boy, has she studied. She doesn’t preach, doesn’t tell you what to do but the information you learn changes you. And she is very funny with it. I’ve burst out laughing several times. I think sometimes in our adoration of celebrities, we often lose sight of the individuals. No one’s job defines who they are and celebrities are no different.

Now back to the title of this post, the book got me thinking. I was a member of Slimming World. I loved it. We used to joke about how we were there because we lived to eat. We couldn’t understand people who “ate to live”. Granted that, at the time, we were talking about people who seemed ambivalent about food and didn’t really appreciate the gorgeousness or the delight that could be experienced from eating really, really yummy food but it strikes me now that that is one of the daftest phrases on earth.

Quite frankly, everyone should eat to live. We should all be focussing on what goes in our bodies and what it does for us. I started reading the book because I knew that my problem wasn’t what I was eating but the way I thought about food. If you change the way you think about food, you automatically change the way you eat. The thought is the cause, the eating is the symptom.

Now, I’m not eating that much chocolate, crisps and cakes hold no appeal. Seriously, this is within a week and I do have a sweet tooth. I haven’t had coffee for three days and I suffered with a cracking withdrawal headache. Proof that it probably isn’t that wonderful for me. I’ll still have the occasional cup, just not every day. I’m drinking more water than ever. I’ve never peed so much in my life. I feel more alive, more clear headed than I have in ages. Don’t get me wrong, I still absolutely adore food. I loooooooove it. I’m just really enjoying what I eat and getting an extra kick out of the fact that I know that every thing that I aim to put in my mouth is doing something wonderful for my body. Of course, I’m not such a zealot that I would refuse food at a friend’s that didn’t match these new goals of mine but, left to my own devices, I am looking at food and wondering what good does it do me. If it does me good, I’ll eat it. If it does nothing but feed me empty calories, then no thanks. My cholesterol level is going to love me.

I’ll tell you this, though. Shops and restaurants do not make this lifestyle choice easy. Wholegrain bread, rice and pasta are not on restaurant menus. I don’t even know if there is such thing as a wholegrain risotto rice, one of my favourite dishes. My local favourite supermarket only offered wholegrain spaghetti; no penne, fusilli or farfalle for me. It’s not going to stop me though. I’ll just make different choices; less pasta, more chicken and fish dishes. I will have the occasional cake or biscuit when out with friends but not in my house.

I do have to be realistic. It is one thing to be swept up in the excitement of a new way of living while you are reading the book that inspires it. It’s completely another thing to carry on after you have put the book down. That is why I won’t be lending this to anyone. I know myself. I can get very enthusiastic one minute and forget it the next. I have the attention span of a fly. So I’m keeping the book with me and I’m making sure that when I start to slip into my old ways, I’ll re read it. It’s that powerful.

Now, Cameron is my new heroine. Can you tell? I’m only half way through the book and am in the bit about movement. Now if I can change the way I approach that too, I am set to be one healthy 40 odd year old woman. It could help with my depression, my skin, my energy levels, my PMS, my stress levels, not to mention my creaky, inflexible skeleton and my self esteem. How wonderful would that be?

Obvious solutions, people!

My husband seems to have bad karma when it comes to toasters. He destroyed our very expensive 11 year old Dualit toaster, that we were given as an engagement present, with a potato farl. Instead of using the toast tongs that were attached to the side of the toaster, he kept pushing on the lever handle more and more aggressively until said potato farl got mashed to a pulp and spread all over the toasting filaments. A classic example of when an obvious solution completely evades a rational, intelligent human being. I mention this because I’ve just toasted a crumpet and the toaster smoked like it was sending signals across the prairie. I looked inside the toaster to see there were cinders of various sizes inside the toaster causing said smoking. I then spent five minutes removing all crumbs and cinders from inside the toaster so that it will now not smoke. I have to add that that was the first time I had used the toaster this week. My husband uses it all the time.

I can’t blame my husband. It seems that there are solution evaders in all walks of life. The one that has really got my goat at the moment is doctors. Moo has had a tracheostomy since the day she was born. At first, it was clear that she needed one as she had absolutely no airway and, without it, she would die. Obvious solution. Over the years, however, she has improved to the point that she now wears a Passy Muir speaking and swallowing valve for up to 12 hours a day. In tracheostomy terms, this shows that she has a very good airway around her tracheostomy because those things are permanently closed and only open when she breathes in. They are very hard to tolerate if your airway is occluded. Each MLB (micro laryngo broncoscopy, the op she has every year to check her airway and see whether her trache is ready to come out) she has had over the last three years has shown no change whatsoever, despite her growth and the fact that her Pierre Robin (cleft, abnormally small jaw) sequence has self corrected and her jaw is now in the normal position. Each time, her consultant mentions that Moo’s mouth doesn’t open that wide and it is a hindrance.

After her last MLB, I started thinking. Could the fact that her jaw does not open that wide be the reason that they can’t see her trachea safely? If they can’t see her trachea safely, they can’t remove the trache because she is classified as unintubatable. If she was knocked unconscious without a trache, they could not guarantee they could intubate her and save her life so the tracheostomy has to stay put.

So I go to an appointment at the cleft clinic at Great Ormond Street, where all of Moo’s complicated care is, and mention this to the doctor. The doctor talks to the ENT registrar. The ENT registrar talks to me. It is possible to make a jaw open wider. It’s not easy and it doesn’t always work but it is possible. There is a potential problem with the larynx that would mean it would be pointless and, if Moo’s consultant thinks she has this problem, there is no point trying. He’ll talk to the consultant and get back to me. I get a call a couple of days ago and the consultant thinks that, actually, it’s worth trying.

Basically, after three years of no change, there is the chance that widening her mouth may result in her being able to be decannulated and get rid of the life threatening tracheostomy. Now, seriously, why has no one thought of that before? Doctors are so stretched that they see patients, deal with what they see and can treat but all thinking seems to stop there. Could there be a way around this problem, could there be something we could try to make things better?

When Moo was a baby, she could projectile vomit about 30 feet. It was impressive. She managed to vomit across a brand new Starbucks; the carpet, the coffee table and the brand new leather sofas. My NCT group were shocked. The Exorcist had nothing on this baby. It was evident from birth that something was going on when she ate. It started with her wiggling and looking uncomfortable. She had terrible wind. At three months, the vomiting started and just got worse and worse. At first, it was only a couple of times a day, then it was after every single feed. We would keep her quiet and still for an hour and a half and hope it would stay down. Sometimes, it did. St George’s diagnosed reflux, our local hospital agreed with them. She was on Domperidone, Ranitidine, Gaviscon; the maximum doses of all three. The vomiting continued. She had two 24 hour pH studies done, numerous barium swallows; all of which showed minimal reflux or none at all. The hospital insisted it must be reflux. She vomited on doctors and nurses and, even though the milk would look like it had come from straight out of the bottle an hour after being ingested, they still said it was reflux. My mother said “maybe she has an allergy”. I told her the doctors would have thought of that. I was recovering from my trauma and only after six months on medication did I feel like my normal self and started thinking about it. At which point, Moo had been on medication for 10 months, to no avail. Finally, I put my foot down and demanded that they try changing her milk. So she went on Nutramigen which improved things slightly. Then they changed her to Neocate which your body has to learn to digest because it is milk broken down to its amino acids. Ten days later, the exact time it takes for the body to learn to digest it, and Moo stopped vomiting, completely. The irony is that she grew out of her allergy eight months later.

The doctor said, “so Moo has a milk protein allergy”. Really?! No shit, Sherlock. You let her suffer for ten months without thinking about it. She was on seriously strong medication for no reason. The only reason they found out about her allergy is because I put my foot down.

My cousin has just had a baby. Said little dude is suffering with all manners of trapped wind. The story sounds familiar. Has he been tested for intolerance or allergy? Apparently not, as the doctors will only do that as a last resort. Is it just me or is that ten tonnes of stupid? A child may or may not have an allergy to milk but they’re going to make the child ingest it until they have tested every other avenue. Here’s an idea. Why not test for milk allergy or intolerance first, rule that out, then move onto reflux? To treat an allergy you change the milk, to treat reflux you have to dose the poor child up with meds and get the balance right. However, if a child has an allergy, no amount of medication (which costs the NHS thousands) is going to help.

The moral of this rant is really this: if you think you have an idea of how to solve a problem with your child and you are dealing with the establishment, speak up because, if it’s obvious, they won’t have thought of it. They simply don’t have the time to analyse and think about each and every case. And sometimes, the most obvious solutions are the ones that are missed completely.

I’m supposed to be ironing, but . . .

I just have to say this. Special needs is expensive!! Granted Moo has her own private, unique little cocktail of conditions going on but the one that costs a bomb is Sensory Processing Disorder. It doesn’t help that I haven’t finished The Out of Sync Child, otherwise known as the parent’s SPD Bible. Between being a full time carer, mother, wife, house cleaner, pet owner (you wouldn’t believe how much time my two cats take up), administrator and slayer of the mammoth ironing mountain that never shrinks, I just haven’t had time to read it in full. Of course, Moo’s SPD doesn’t care about that. It is developing relentlessly and what it is doing now could make all of Moo’s other issues raise their ugly heads en masse. Basically, it won’t let her get to sleep. This is a child with a very limited energy resource and a strength of will that would have made Hercules baulk. So, what we have is a child whose mind thinks it can conquer the world continually and a body that can’t make it through the day. If she doesn’t get enough sleep, her body will crack up. There will be chest infections that could lead to hospitalisations, transient ischaemic attacks (TIAs) (that’s mini-strokes to you and me), headaches that make her scream in pain and, of course, the real evil monster lurking in the wings; the ever present chance of a major stroke.

And she’s not happy about it. We’ve had nights with tears when she just can’t get to sleep and she is so tired that all she can do is weep. Moo never cries so it is heartbreaking. We’ve had hours of playing in her bed, as fresh as a daisy in appearance. We, as parents, are very lucky. Once in bed, Moo just doesn’t get out, unless she needs a wee, thank goodness.

So we’ve tried a weighted blanket that I made, the beads cost a fair bit. It worked for the first week but things have moved on since then. It now works after she’s been up a couple of hours and I’ve given her a deep massage and then she only wants it on her legs and hips. Then we’ve bought the relaxing classical music, she likes it but it doesn’t relax her. I’ve bought a massage brush but it you do it too early, she loves it but it does jack to relax her. She’s taken to kicking her bedroom walls for the pressure feedback in her feet. It sounds like she’s having a party with a herd of elephants. Now I’ve ordered Lycra fabric to make a bed sock and a salt lamp. “What, pray tell, is a bed sock?” I hear you ask. It is exactly what it says on the tin. It’s a sock for your bed, well, mattress. Basically, you sew Lycra into a sock shape and slide it onto the mattress. It should be snug but not stretched too tight, a bit like a condom. The person climbs under it and it gives a deep pressure. The bed sock should give the right pressure feedback and the salt lamp should help with the orange glow to get her to relax but also the salt in the air will help her lungs.

All this on top of the private neuro assessment that we have booked with Hemispheres. I am hoping they will be able to tell me everything so I know what I am dealing with. At the moment, I deal with the obvious and hope I don’t make other stuff worse. It’s all a crap shoot.

And, yet, I still wouldn’t change a thing. This is the child that I took to London Zoo yesterday for the Special Children’s Day and let her loose in the shop. She was allowed to choose anything she wanted. There were books, girlie things, cups and saucers and what did Moo choose? She chose a very large, long, stuffed snake. No namby pamby pink teddy for her. No, sirree. She has a bright red and orange snake that is actually longer than her. With her bonus features, her desire to live life by her own rules, her medical puzzles; my kid rocks! God bless her.

Shooting Star and what it means to us

Shooting Star CHASE is the local children’s hospice that literally saved my life. When Moo came home from the hospital for the first time at nine weeks old with a tracheostomy, just before Christmas, she also came with a chest infection and no care package. Here I was with a 9 week old baby that I had tried to have for 5 years and she required 24 hour care. Her airway was utterly blocked and she was fed by naso-gastric (NG) tube. She had had a 6 minute cardiac the day she was born as they tried to intubate her for surgery. Her life depended on my being on the ball. If her trache fell out or got blocked, she would die, quickly. She required feeding every 4 hours, day and night, and would pull out her NG tube. The nurses wouldn’t train me to put one in while I was learning about the trache so we would have to go to hospital and wait around for someone to be free to do it, often in the middle of the night.

My family live abroad so couldn’t help, even though they desperately wanted to. My in laws, some of whom live close by, were too scared of the whole thing. I tried to do it all by myself, as Mr G returned to work after Christmas, because I didn’t have a choice. Every where I asked for help, I got turned away, except for by Shooting Star. I started to have anxiety attacks, became very depressed and went to the darkest places in my mind. Finally, while a couple of the nurses were at my home during a Hospice at Home visit, I was woken with a shock and had one of the worst anxiety attacks of my life and nearly fainted. They took one look at me, called the hospice and had Moo admitted for a two night emergency stay. We ended up living there for three months while they campaigned on our behalf to get us the care package we so desperately needed. They wouldn’t let us go home until we had it in place. I received psychotherapy and was diagnosed as severely traumatised. With medication, time to recover and the support of Mr G and Shooting Star, I returned to my normal self. Without them, I wouldn’t be here now. To this day, they are still the only practical and respite support that we have. No one else is trained to look after Moo, it’s just Mr G and me.

Every year, they hold a Christmas Carol service for the families that they support. Last year, I offered to do a reading. This is what I read:

Hi. My daughter, Moo, has been supported by Shooting Star since she was 9 weeks old and released from hospital. She’s just turned 6. When I volunteered to do a reading, I was very confused about what to choose. Christmas, as well as being a time for thanksgiving, is also a time of reflection for me. So I thought I would share some of our story with you and how life has not turned out quite how I planned. God had other plans for us and He really does know best.

I’ve wanted to be a mother since I was an egg. I have had a blessed life, wonderful friends and family, challenging and fulfilling jobs, foreign adventures but all I’ve ever really wanted was to be a Mummy. I was going to have four children. My husband wanted two. We still needed to discuss that. However, like a lot of people, our path to parenthood was long and traumatic. It took fertility treatment and two years and 11 months to get pregnant the first time. Our son, Ziggy, was stillborn at 5 months. Two years later, after failed fertility treatment, we got pregnant naturally. After yet another traumatic pregnancy, 9 weeks of labour (yes, I am that hard core) and a c-section, our amazing, beautiful daughter, Moo, was born. We were thrown into the world of life threatening conditions, hospitals, hospices and special needs from the moment she arrived. Life was so hard. This was not the parenthood we had envisioned. It took me 18 months to apply for a blue badge because I could not see that Moo was disabled despite having a tracheostomy and pronounced motor delay. She was just my Moo, my beautiful girl. Then I read something that brought me comfort and, bizarrely, peace, which I would like to share with you in a moment.

As for us, we are a very happy family of three with three cats. Life is different for us than most of our friends. Moo continues to face challenges but handles them with such grace and always has that beautiful, joyous smile on her face. She is so strong in spirit and mind, very funny and full of life. She is our inspiration and our joy. Our version of parenthood may be very different and can be very, very hard emotionally but we wouldn’t change a thing. We have gained far more than we have lost. I, personally, have learnt so much. I am far stronger, wiser and more compassionate than before this journey. I have met some truly phenomenal people who I admire so much who dedicate their time to families like ours but, most of all, I am so grateful for the children I have met. The angels on earth, like my Moo, and those who have gone to Heaven. I think of them all the time. All have touched my heart and proven over and over again, that just because you are different, it does not mean that you are less.

Now that reading:

WELCOME TO HOLLAND

By 
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.

But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

Some life lessons learnt the hard way

2011 was a really tough year. It was the year that I lost someone I loved deeply to cancer, my mother in law. As with the loss of a loved one, all manners of emotional chaos preceded and ensued after her passing. I wrote these life lessons four months after she passed away and I may sound a little bitter at times but it is all good. I needed to learn these and they have been the greatest gift.

1) Deep gratitude for a life lived really can assuage the grief of its loss.

2) No matter what my intentions or how well someone knows me, people can completely misinterpret what I say and do and judge me to be a bitch.

3) Sometimes I perceive a friendship that does not really exist. Some relationships in my life are very much on other people’s terms, they’re happy to take but don’t want to give because I’m not that important to them.

4) Just because I love someone and feel utterly loyal to them doesn’t mean they appreciate it or deserve it. Sometimes, you’ve got to accept that things will never be how you want them to be, no matter how hard you try to make it so.

5) I can’t blame or resent someone for their hurtful behaviour, if I haven’t told them it hurts me. How they respond is completely up to them and not my responsibility.

6) If I rock the boat, I should be prepared to be pushed out of it. Some people care about my feelings, some care more about their own and don’t want to know. It’s all part of life’s rich tapestry. Beautiful on the surface, with painful knots underneath. Just have to come to terms with it.

7) Some people really don’t understand that a relationship is only between the two people involved and shouldn’t be judged unless you’re one of them. A person’s perception of a relationship between two other people is never the reality. I was very disappointed and deeply hurt by the accusations leveled as a result of this one, but I learnt from it.

8) Even if you don’t agree with someone’s point of view, you can support them just by listening and being there.

9) Sometimes the anticipation of a painful conversation is often far worse than the conversation itself.

10) My perspective is my perspective. If I’m hurt and raise the issue, it’s because I want to resolve it which can only be done by discussion, mutual respect and open hearted listening. It’s not up to me whether you want to participate.

11) If I love you and something is important to you, that makes it important to me and I want to know, but I can’t be held responsible if you have decided not to tell me.

12) I really can not bear lying, false promises and deception. Tell me the truth. I can handle it.

13) My husband and my daughter really are the most important people in my life. I will hurt myself, if I feel I have to, to protect them.

14) I really have some truly lovely friends, my urban family.

15) If I make it a priority to spend time with you and you do not do the same, eventually I will change my priorities. I want to be a part of your life but only if you want to be a part of mine.

16) If someone sincerely apologises to you, it’s up to you to decide to believe them and let go of the associated pain. If you do, it really can heal years of anguish and improve your relationship dramatically. I wish I’d asked for the apology years ago.

And finally . . .

17) If you put too much on Facebook, no one needs to call you to find out what you’re up to. Have to stop using it like a diary and start being more private. This will make my husband really happy. At last, he’ll be able to have conversations with friends where they don’t already know what he’s going to say!

Since I wrote these, Mr G has actually joined Facebook so he is as much in the know but now I’ve started a blog instead! People will have to consciously choose to read my witterings, rather than being blasted by the newsfeed.

I miss working!

Just had so much fun redesigning a friend’s CV. He wants to move after 16 years in his current job and, while his experience is amazing, his ability to design an easy to read CV is shocking. Poor bloke. We went to his house for lunch and he asked for our input. Mr G was very gentle. I took a pen and ripped it to shreds. He wanted constructive criticism so I gave it. He seemed appreciative. The problem that I have is that I love proof reading, grammar is an obsession although I know that I am not perfect at it, and designing documents so they are easy to read is something that I find so much fun. It’s one of the reasons I loved the PR element of my degree so much. I love to write, to sell and to edit. When I worked in the City, I helped to produce Equity Research reports. I loved it. I loved the proof reading, the editing, the layouts, even the graphs and presentations. Some of the people were are a bit odd, though. Swings and roundabouts. Then when I ran my business, I drove my business partner crazy with how much I would get into the detail of things. Quite handy when it’s someone’s ‘once in a lifetime’. Unfortunately, it extended to the office. I wouldn’t let her put labels on our files because they all had to match, at the same level, equal on all sides and absolutely spirit level straight. It drove her nuts. She wasn’t that surprised when I was diagnosed with OCD after Moo was born. It turns out that I am an obsessive thinker and you don’t need to be compulsive to have OCD. It was somewhat ironic, though. She’s compulsive and I teased her mercilessly about it. Karma, people. It exists and it will bite you. Be nice. It sort of makes sense of why we were such a great team and enjoyed working together so much. Although, it really is annoying when you are walking down the street with someone having a full blown conversation, only to turn to look at her and realise that she isn’t there. She’s halfway down the street behind you, checking her handbag. I had to build in faffing time for when we left the office. She got help and is a lot better. I should have learnt from her and done the same thing before I had Moo. I’m a lot more compassionate about the whole thing now, of course. Nothing like a bit of a breakdown and depression medication to make you realise that we are all not perfect, that each person deals with their stuff in different ways and we should not judge. Her way is a lot healthier than mine, let’s put it that way. At least she can sleep like the dead at night.