Education is key! Muppets.

I’ve become involved in a local arm of a national campaign for fair funding in all schools. I sort of fell into it as I do. I was volunteered to write the text for a change.org petition and ended up posting it from my account. Next thing I knew, I was part of the team. At first, I wasn’t sure that I had the capacity to take this on but the more I learnt, the more angry I became and now I am so grateful that I am. At least, I am actually trying to do something.

What’s the worry, you might say? Well, here’s a little film that we made to explain a bit about it. You’ll see my very own Moo in there too. So essentially, the “ring fenced” education budgets of schools have had quiet little unsupported additional expenses forced onto them. Well run, inclusive, amazing schools, like Moo’s, are going to go into deficit for the first time ever and will never come out again. So this year, Moo’s school will be in its first deficit of £15,000. Not much, you might think. However, by 2020, in THREE years’ time, that deficit is forecast at £450,000 and growing! That’s the equivalent of 8 teachers. If you want to see what is going to happen to your school, just click here. This is not an exaggeration although I really wish it was.

We held a public meeting on Monday at one of the schools in my area. Both MPs, one Liberal and one Conservative, came and spoke as well as a headteacher from a primary, a headteacher from a secondary, Matt Dykes from the national parent-led campaign and a member of the NUT. Everyone, regardless of politics, agreed that education needs more funding. It was a very successful meeting in that we had set it up to inform parents of what is going on and around 300 parents turned up. One of whom wrote how they felt afterwards here.

In my Greater London area, it’s really expensive to live but we do not qualify for London weighting so our school is funded £4,700 per pupil whereas a school a few miles up the road might be funded £7,500 per pupil because it is central London. Nuts, right? However, I might add that the schools funded like that were failing before the additional funding they received kicked in and now, as a result of better funding, they are soaring. So what was the government’s answer to this? Take the money away from those schools and give it to rural schools who are struggling. So essentially, putting those schools that have worked so hard to raise their standards and need the extra funding to do that back at square one.

As I mentioned, my school receives £4,700 per pupil and funding cuts are about to come in. Now this is where I get really mad. If a school is only receiving £4,700 per pupil but has to find the first £6,000 for every SEN child in their school before they are entitled to additional funding from a Statement for SEN or an Education Health and Care Plan and budgets are shrinking, it doesn’t take a genius to work out that soon enough, inclusion is going to be too expensive for schools. In my school, that’s an additional £1,300 per child! That means that children with physical disabilities who need a carer on site but would otherwise thrive in a mainstream environment, won’t necessarily be able to go to school. Or kids who have learning disabilities but just need a little extra support to access the curriculum won’t be able to go to a mainstream school or will languish at the back of the class, not keeping up. I know this because I asked the question of two headteachers’ at our public meeting. Both schools represented had provisions for SEN kids. The primary head runs a school where 38% of the kids are on the SEN register. She said that she now has to look at a child’s case, considers what that child would need to succeed at her school and whether she will be able to afford the therapy and support that child will need. If not, she can’t accept the child. That is not her fault. That is the real effect of  a lack of funding.

And it’s not just the SEN child that suffers. My daughter’s peers have gained so much from her inclusion since Reception. Not only have they had additional LSAs in their class but they have learnt from a young age that not everybody is the same. That different does not mean less and is not something to be derided, abused, discriminated against. They are more rounded individuals because they have learnt compassion and empathy from a very young age. Their generation is our future society. If mainstream schools can’t afford SEN kids, there will be more division, more discrimination because us, humans, are not anything if not predictable. What we don’t know, understand or are exposed to is unknown and fear of the unknown breeds prejudice. I don’t want my daughter to live in that kind of society. When we are in the age of celebrating the Paralympics as much as the Olympics, when disability access is something hard fought for, I don’t want society to go backwards. I don’t want future generations to miss out on being more rounded people. We need a more compassionate society and this is one of the easiest ways to build one.

So I am left feeling frustrated as hell. Not enough parents are getting involved. The government is very dismissive of teachers’ concerns. They say that they are over reacting but I know that they are not. They can say what they like but schools are at a tipping point. After five years, Moo’s school is no longer able to afford her two carers at all times. Next term, she goes down to one. There are schools where teachers are taking study materials home to photocopy them for students because the school can’t afford the paper. One of my fellow parents just donated a whole box of glue sticks to the school. And if we do nothing, there will be bigger classes, there will be reduced selection of subjects, there may even be shorter school weeks. I feel for those kids who aren’t the most academic but are phenomenal artists, actors or musicians because those will be the subjects that are cut first.

And who would be a teacher in this environment? Why are teachers so undervalued? They are the ones teaching our future doctors, scientists, lawyers, leaders. They must have the patience of a saint. I couldn’t do it. Why isn’t teaching a recognised, respected and well paid profession like being a doctor or lawyer is? It seems madness to me.

So if you read this and feel like you want to help, I beg you, please click here. Sign the petition, fill in the consultation before 22 March, write to your MP. The whole process might take an hour of your life and it means that, in five years’ time, you can look into any child’s eye and know that you did something, you didn’t sit back and let it happen. Let it be known that we demand a fairly funded education system where every child gets a good, appropriate education. They deserve it. At the end of the day, if you want a world class education system, then you have to pay for a world class education system, and, without it, how is our society meant to progress?




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.


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.



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:


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.