Over the Rainbow

I received a gift a few weekends ago from a visiting family member. A beautiful bunch of rainbow tulips. It was a lovely surprise and a simple act of kindness that brought much pleasure for the week after their arrival. I had forgotten how much I really love tulips and how lovely it is to have some of outdoors indoors...


When I found out I was having a baby in 2010, I was concerned about how the future would be with a child; maybe some of that was to do with the surprise of finding out I was unexpectedly pregnant. I think that all first time parents have some fears about having a child, whether it is surrounding the birth, the sleepless nights, their own ability to manage as a parent or what lies ahead on such a life changing journey. All questions of course that you can't know the answers to until you experience it, and completely natural questions in embarking on a new learning experience.

However a few short weeks after my initial surprise, the goal posts were changed as I discovered that I was expecting a child with Down Syndrome. I didn't really understand the implications of this news having no real contact with anyone with Down Syndrome. I was quite shocked, to say the least, but as a person who likes to be prepared, I decided to try and arm myself with the facts and read as much as I could in an attempt to regain control of what felt very much beyond my control. Of course it's a tricky balancing act between finding out facts and scaring yourself silly.

I had many questions about living with a child with Down Syndrome, such as whether we would we be able to do typical things with our first child? Would he be able to walk and talk? Would he go to mainstream school? Knowing Jake was going to have Down Syndrome added a further layer of complexity to the general parenting concerns with no answers at that point. Those people who know me well understand that patience isn't my greatest strength!

I clearly remember a discussion with my antenatal mum friends a couple of weeks before my due date when we met for lunch (ah those were the days!) and I talked about how I needed to reset my expectations for the future, and that my baby wasn't likely to be able to go to University as both his parents had. One of my friends stopped me in my tracks and said “Why would you say that? You don’t know what the future holds!”. And she was right. It was a slap in the face. Why would I limit my child? I think I had become so caught up in the diagnosis of Down Syndrome and not yet met my beautiful little boy, that I was trying to understand what expectations to have. The lesson swiftly kicked me back into the right lane and the world is Jake’s oyster. It is not for me to define his future based on my or anyone else’s expectations. Looking back after 5 years, and being a few years further along the parenting path, I have learnt important lessons which include, taking one step at a time and not to focus too much about the future – the worry as a parent never goes away, but you must embrace and enjoy the time you have as it passes so very quickly!

One of the big milestones I did set my sights on was for Jake to attend nursery and me to return to work full time, with the eventual goal of him attending a mainstream primary school should he be able to. We have had many challenges in his short life with major open heart surgery at 5 months old, subsequent oxygen requirement until he was 2 and a half and not being able to walk until turned 3. These factors did impact on his ability to play alongside and integrate with his peers in nursery. His nursery class were a fantastic group of children and we have made many friends (both children and parents) since Jake and his younger brother have attended. Jake was accepted and loved as one of the gang. They also helped him when he needed it. When Jake was in the 1-2 years room, he wasn’t yet crawling and attached to an oxygen cylinder, his friends used to get books and toys for him as he wasn’t able to reach them. These were little toddlers who were only just able to walk themselves and yet they understood, accepted and supported Jake when he needed it.

Jake graduated nursery with his class mates last summer and is now attending one of our local (mainstream) primary schools. In reaching that point, there were many sleepless nights about whether we were making the right decision? Would he be able to cope? Would he be happy? I am delighted with how he has settled in and at half way through his first year, we can see him coming on in leaps and bounds as he is learning to read and is settled into school life. He seems to be a popular boy who is regularly greeted by older children in the playground! He has been invited on play dates and we have had invitations to 7 [seven] parties for his class mates since December. It feels like a different party each weekend but I am very pleased that he seems to be accepted as part of the class.

One invitation particularly touched me. A couple of weekends ago, Jake attended a party for a little boy who we hadn’t heard of. I assumed that this child was a classmate who we hadn’t yet met. It turned out that this wasn’t a child from Jake’s class. It was a friend from the playground who was in another class, who had invited Jake to his birthday party! A small part of me always wonders whether Jake has been invited as the whole class has an invitation. This has not been the case other than one or two occasions. But here was Jake, being invited to a party where that was not even a factor. What an amazing thing! I was so touched that Jake had made friends enough to be invited. Especially in light of the fact that the school has 4 classes in Reception, so almost 120 children in Jake’s year alone!

When I was a child, people with disabilities didn't attend mainstream schools, they went to special schools. Things have changed 30 years later, children of many abilities attend mainstream schools and I hope it adds a richness to that environment that would otherwise be missed.

I hope that Jake brings a different view on life to those people he encounters and that he continues to push boundaries, challenge preconceptions and outdated ideas of what living with Down Syndrome looks like today. Jake seems to have a positive impact on everyone he meets which continually surprises and delights me. He is a fully integrated and included member of his class in school, even after a short time, and I hope that he continues to bring rainbow colours to those he meets in his future, whatever path he chooses for his life. After all, the world is his oyster!


I was reflecting this morning on what it was that made the tulips so beautiful? I think it was the fact that they were Rainbow Tulips and contained a combination of different colours. This set them apart from those tulips which are all one colour and alike. The diversity of colours combined really brought them to life…


This blog was published by Down with Dad as part of 21 Blogs about Being Different in Support of World Down Syndrome Day in March 2016.

To read the other blogs, visit his website: http://www.downwithdad.com/21 blogs

Are Women Really Equal to Men in 2016?

A post for International Women's Day 2016. 

 

Another International Women’s Day.  Another year of men sighing, rolling their eyes and asking “What about International Men’s Day?”.* “Aren’t we all considered equal now?” “Enough with having to make a point!”. But are women actually equal?

When I was growing up in the late 70s and 80s in Liverpool, it was a time of political unrest and racial tension. We saw riots on the streets not very far from where I lived. Since then, as a society it *feels* like we have come a long way, there has been more acceptance of difference and laws have been put in place to try and redress those open inequalities. 

My own childhood saw both of my parents trying to better their circumstances and attending college, night school and university whilst trying to juggle also working, keeping a home running and organising three children (one of which was born during this period). This definitely had an impact on my view of the necessity of education and resulted in me not even questioning going to University after school. It was a foregone conclusion and expectation was high, which in retrospect did place a certain amount of pressure on me. But this type of foregone conclusion was not the case for many of my friends in an all-girls school, who had no expectation other than to leave school at 16 and get a job somewhere.

I think as you get older you have a more balanced view of the world and appreciate that academia is not for everyone. People have different strengths and weaknesses and are not usually judged on their academic ability in order to be considered a success in their chosen career. And likewise, we should not judge others based on factors which have no bearing on their ability to carry out a job, this includes gender. 

For the vast majority of people today, to consider someone unable to do their job based on their gender would be considered ridiculous. However, it isn’t so much the overt discrimination which continues to be such an issue, although this is still happening and is unacceptable, there are at least steps that can be taken for redress. It is the covert, “undercover” or unawareness of using gender to make decisions which in my opinion is still an issue today and I don’t know how we can change this. 

According to recent statistics**

The full time gender pay gap is 10% and for those in part time positions this rises to 34.5%.  

Approximately 70% of people in national minimum wage jobs are women.

 Women make up only 17% board of directors of FTSE 100 companies.

Women are still struggling in the work place to be seen as equal to men, it is as simple as that. Although great strides have been made, somehow women don’t seem to be promoted to as many top positions as men. In my experience it seems that women have to work twice as hard to prove themselves equal to their male counterparts and then struggle to be heard with a voice of authority. It is not a big surprise that a lot of women at the “top” are quite tough and can not be seen to be emotive and sensitive as this is “not what leaders do”. 

 

And yet are we missing a trick? Is this one of our best qualities as women? A good manager surely can be tough when required and have empathy and kindness for their staff without being walked all over. If a male manager was like this, he would be considered a great boss and yet if it was a woman, the empathy and kindness could be considered as a sign of weakness…

 

I think the solidarity of male only Societies, golf clubs etc. where a lot of business takes place does not help the case of women feeling included and it does not do much to level the playing field. But then I don’t think that women help themselves at times. Although they can be placed in a position where they have to work so hard to be recognised, in many cases the competitive edge required to climb the career ladder means that their female colleagues are viewed as a threat. They do not work together like their male counterparts, they work in isolation and this cycle continues where male colleagues are able to help each other out and up.

 

The Equalities and Human Rights Commission estimates it will take 70 years at the current rate of progress to see an equal number of female and male directors of FTSE 100 companies.

 

We need to stop the cycle continuing and start being true to ourselves. But we also need to start working together as women- 70 years is an unacceptably long time to wait for equality.

  

*19^th November 2016 is International Men's Day

**Source: UKfeminista.org.uk

To the Moon and Stars

Death. It’s the ultimate in finality. Put simply, it is the end of life.

January 2016 has witnessed the passing of a surprising number of household celebrity names. From famous musicians, writers, actors and presenters, it has been a sad time and it has encouraged people to pause and reflect on what losing those people has meant personally. The reminiscence of what they mean to you has no doubt been linked to specific memories and cherished days gone by.  The sadness caused by never being able to live that time over again.

Is death the thing we fear the most? Is it even something we give any consideration?  I think that unless you are living with illness, are closely connected to illness or confronted with the possibility of death in some form, it probably isn't something that the majority of us think about on a daily basis. And that's surely ok; if we are so busy focusing on our mortality, we might actually forget to live our lives to the full.

When my son Jake was a baby, he had major heart surgery to repair an AVSD (atrioventricular septal defect). This is a fairly common condition for children with Down Syndrome but can occur to anyone. Thankfully, we are very lucky to have the amazing Alder Hey Children’s Hospital on our doorstep in Liverpool. Jake had heart surgery just before he was five months old. However, following the surgery, we experienced numerous occasions in the subsequent couple of years where we didn’t know if he would live or die. There were some dark days and nights spent watching monitors and praying that he would get better. We joked at the time with a dark humour that we didn’t need to ever wait in A&E to be seen, we were referred straight through to one of the Crash rooms every time and on one horrible occasion we were admitted under blue lights. 

A day that will haunt me forever.

Jake’s stormy post-operative recovery was a challenging time, we were told that if he was suffering from pulmonary hypertension following the surgery, then he would not live to school age. We had an agonising wait for an appointment to carry out a heart catheter to see what was going on. Thankfully, it wasn’t the hypertension that they feared and I am so happy that we have a happy and healthy little boy who is now five years old. However, during this period, I spent many hours  considering life and death and contemplating what this meant to me… I don’t think I could ever fully accept the possibility that we would lose Jake.

This week, we lost a close family member. A kind, courteous gentleman who my children knew as their great grandfather. He adored his six great grandchildren (with a further little one on the way, who unfortunately he didn’t get to meet) and this was reciprocated. He passed away peacefully in hospital after several weeks of deterioration and illness. Looking back, we have suspected for a while that he had been ill, but courageously he didn't share this to protect his loved ones.

This presented me with the dilemma of how do you break the news to a five and a three year old that they won't see their Grandy again? Thankfully to date they have suffered no loss of family, friends or pets so this was a completely new concept for them. Should I have been straight to the point with them and explained that he had died and they wouldn’t see him again? For children who are just getting to grips with understanding days of the week and months of the year, forever is a long time to never see someone again. 

So what about the question of where he has gone? How on earth do you answer that question? Whatever your beliefs and if you have a faith or not, it’s an enormous concept to understand as an adult, let alone a child, My 3 year old, Joe, is in a “Why?” phase and was shocked that he had blood in his body recently. We needed to be prepared to deal with difficult questions. I guess that's just part of parenthood - to guide your children down the path of that middle ground of trying to prevent pain whilst educating them and helping them understand. Undoubtedly they would be sad about the loss of a loved member of their family. I was dreading telling them.

As it turned out events took a path which helped me be able to deliver the news in an appropriate way. A chance conversation with Jake's Teaching Assistant in School on a Stay and Play visit, happened the morning after his Grandy passed away. When I collected Jake from School, (which I can only do when I am on annual leave from work, so a rare treat for us both!), his teacher came and spoke to me. She said they had read a book with Jake about Elfie the dog who was old, grew sick and died. She said they told him that Elfie had gone up to heaven and was up in the stars. As part of the National Curriculum, Primary Schools are studying “Space” this term and I had been surprised earlier that day, at the level of detail the children knew;  the year of the moon landings, Apollo 11, about gravity and all the planets. Fantastic stuff.  Jake's response to Elfie being up in the sky with the stars, was that “he was with the moon.  And Neil Armstrong!” it gave us all the chuckle we needed. Even the staff had welled up reading the book with him.*

The advice from school was not to say that he had gone to sleep as that could set you up for future problems about being afraid of sleeping. That was really helpful as it could easily have been framed that way in order to soften the blow. They also recommended Winston’s Wish Charity which had some helpful advice http://www.winstonswish.org.uk/

So now I needed to tell them both about Grandy.

I decided to tell them over dinner, largely as I’d been putting it off all day and didn’t want it to creep towards bedtime. I also didn’t want to make a big thing of it and “sit them down to tell them”, I felt that if it was explained when there were no other distractions (food aside) then hopefully the message would be clear. I explained that Grandy had died and gone to heaven, up in the stars, he wasn’t sick any more, but we were sad about it and wouldn’t see him again. Jake didn’t say anything, he was busy eating, but Joe asked “Why won’t we see him again? Why has he dived?” No, that’s not a typo. It was a new word for him, so we went back over why he had “died”. I explained about how people are born as babies and they get older and people die. It happens to everyone! He said “That’s sad!” He also asked about the stars and how Grandy had got there “Did he go in an aeroplane??” No Joe. “Well how did he get there then?” Tricky question that one, I had a brief flash in my head of trying to explain the separation of the soul and the body and considered the inevitable questions that would follow. So I took the easy path “It was just like magic, he’s in heaven now and not sick any more.” That seemed to help but I didn’t really know how much had been understood and didn’t want to press the matter. 

The next day, we were in the car going to the Museum and out of the blue Joe said “Mummy… Grandy died.” Yes Joe, “Magic up in the sky! Oooh A DIGGER!!!” as he spotted building work out of the car window. You have to love how kids are very much in the moment. 

Later that day, we read the book that school had sent home. It was a sad book about Elfie growing up from a puppy and how he grew old and died. It helped to reiterate the facts. I think Jake has a basic understanding of what has happened, but he isn’t giving too much away. Joe on the other hand is a chatterbox. He said after the book “Grandy isn’t sick now. But Nanny is sad. We can draw her a picture to make her happy!” And they both worked hard on their pictures for their Nanny. :)

I love that he thought of something practical to help, I think we must be doing something right as parents ;) I hope that I haven’t set us up for future problems, but what a tricky thing to go through. Another parenting first!

In considering life and death through the eyes of my children, it raised the question of how many of us actually give thought to those who are alive and with us now?  Many of us spend so much time worrying about what has gone before or planning for the future that we neglect living in the present. One day the people around us will have grown up, might have passed away, time passes so quickly. So my challenge to you is to consider all that you have in your life right now. To stop worrying about the past which can’t be changed, to live in the present and not focus too far into the future that we forget to live right now. We only get one chance at this life, it is time to shift your focus and embrace it to the full.

In the words of Joseph Scott, aged 3, wise beyond his years. “Ooh a DIGGER!!”

*I'll Always Love You by Hans Wilhelm

Separated At Birth

Last night my youngest son, Joe, was busy playing after his dinner. His big brother was practising writing his letters on one of those magnetic boards which wipes clean again (fabulous invention and no mess either!). So in looking up to him, as all three year olds tend to do, he decided he wanted to draw on his board too. 

He seems to have a creative streak and enjoy drawing, painting and colouring in. It has been largely scribble and the odd shape to date so my expectations were low as to what I was likely to see…

“Mummy, this is a picture of you! Wait, I’m just finishing the hair…”

 

I am pleased to say that it is indeed a fabulous picture, I am delighted that he seems to have inherited some artistic ability. Just a shame I look like Herman Munster…

 

Five Years On

Five years on and the memories are still vivid

Of a tiny baby being wheeled away, off into the twilight of life versus death

Five years since the longest wait to see you again

Covered with wires, the bright intensity and babble of foreign medical languages which we had yet to learn.

Five years since the sleepless 3am visits and somehow existing

With the unexpected kindness of staff, family and precious friendships

Five years since we took you home for a while, heart working well

And yet you were not well, the sleepless nights, the return to monitors, oxygen, constant alarms

The delayed return to work, the fear that we didn’t know what was wrong, of holding our breath and living on pins

Would you make it? 

Sitting on the campbed in new makeshift residence and living out of bags

The sun trying to force its way through the blinds and tell us it was going to be ok in the end

Five years on, you are a picture of strength, happiness and cheekiness

Five years on we are stronger and almost healed…

Today marks the five year anniversary of my son Jake’s open heart surgery. To say it was a tough time is really quite an understatement. With thanks to Alder Hey Children’s Hospital and Ronald McDonald House for all their fantastic work and to family and friends for their love and care.

9/2/2016

Too Soon

The cherry blossom has bloomed.

Too soon, too soon. 

The decay and black hand of winter has barely touched us and here is the new growth. 

The new life and beginning of another year. With little time to draw breathe and start to form the new intentions that another year and another Spring bring to us all. 

The wandering daffodils are spilling across the urban parklands and hinting at what awaits us amidst the icy tendrils of another stormy day. 

But not yet, wait with your sunny faced intentions. 

Take time to push your way into our consciousness. Because we are 

Not yet ready. 

Not ready to embrace the beauty of Spring. 

We are still sleeping. 

Resting and building our strength to welcome you with open arms and drink in your glory.  

Nothing To Be Scared Of

Original Post published 21st March 2013 for World Down Syndrome Day.

For those of you who know me, you will appreciate that the last three years of our lives have had many highs and lows. You will also appreciate that we are fairly private people and don't really post much about our personal lives. However today I'd like to share with you... Three years ago I found out I was pregnant which came as a complete surprise, I wasn't ready or old enough (!) to be a mum- the thought if it was just too scary- we had plans-there were places in the world we still wanted to see, our house was one big DIY project with every room requiring a complete overhaul...

Having finally adjusted my mindset to the positives of motherhood and feeling the baby move a few weeks later, the curve balls that we were to be thrown were far from over... A routine pregnancy blood test following our last holiday abroad as a couple was to change things again. The Fetal Centre at Liverpool Women's Hospital invited us to come in to discuss the test results which had shown a high risk of chromosomal abnormality. In short, our unborn child could have and it turned out did have Down Syndrome...

Fast forward three years and last night was a usual busy evening in the Scott household- trying to get dinner at a reasonable time with a two and a half year old who would rather sing 'Wind the Bobbin Up' than eat his dinner (although dessert is no problem for him funnily enough!), who then proceeds after dinner to empty the contents of the kitchen cupboards all over the floor whilst we try and clear the dishes, put the online food shopping away and try and bake cakes for Tim's work cake sale the next day. Meanwhile our 3 month old baby wanted feeding (again!) which meant a pair of hands less to help with the bath, bottle, bed routine. Nothing unusual there (except we don't bake cakes every night) in our usual battle to maintain these routines and have everyone fed, watered and in bed at an hour that is always later than we'd like. We sound like a normal family and that's what we are- a normal family raising a child with Down Syndrome.

Jake was born in September 2010 with an extra 21st chromosome. This wasn't anyone's fault, it was not hereditary, it was just one of those things... Jake was diagnosed before birth with Down Syndrome and a congenital heart defect which would require open heart surgery before he was 6 months old to close a large hole in his heart (it was more like reconstructing his heart to function normally in reality).

We were initially advised to consider terminating the pregnancy before he was born based on the heart condition (which could be repaired) and his Down Syndrome but decided to continue despite the fact that over 90% of people choose to terminate given this kind of news, a figure which always shocks me.

Jake had a rocky start to life, spending his first week in the Neonatal Intensive Care Unit and has had several stays in Alder Hey Hospital following his heart surgery at 5 months old as he struggled to cope with common viruses as he recovered from the surgery. He is a child who has had quite a few challenges in his short life and continues to amaze us with his determination to overcome them and still keep smiling!

In the recent past, a person with Down Syndrome was considered unable be educated by law and in many cases sent to an institution to live. Today's world is a very different place and we have high hopes for Jake. He attends a normal day nursery which he loves and we hope he will attend mainstream education. So far he is keeping up well with his peers and we hope that this continues. Jake loves to play to an audience and is a popular little boy in his nursery class. We are always surprised by people's response to Jake as he charms people wherever he goes. Before he was born I was scared that people would stare at my baby but today am a very proud parent of two lovely little boys!

Today is World Down Syndrome Day. This the eighth year of this event which aims to bring awareness of Down Syndrome and the second since it was recognised by the United Nations. Jake does not 'suffer from' Down Syndrome, he has an extra 21st chromosome which gives him something special and that's nothing to be scared of.

Where Is The Line?

The new Non Invasive Prenatal Test (NIPT) has been heralded as an advance in science and medicine. It is a test which assesses whether a baby has certain genetic conditions such as Downs, Edwards or Patau Syndromes. Previously women were offered invasive testing such as CVS and amniocentesis and these carried a risk of miscarriage. Undoubtedly the new test is a positive step as it will mean fewer babies are lost in carrying out such tests. 

However, there is a darker side to this test which people may not have considered. Whilst this test will save many babies’ lives lost during the tests, it is likely to increase the number of terminations that take place. Currently 90% of babies identified with Down Syndrome antenatally are aborted. Shockingly this is legally allowed to take place up to full term, compared with a 24 week cut off for “normal” babies. I do not wish to pass judgement on anyone making the decision to terminate their pregnancy, there are a range of reasons why people might choose this path. Having been in the position of having to make such a choice myself and being advised by the Professor of Medicine carrying out my amniocentesis “I suggest you consider termination” it’s not a nice place to be. The medical world appears to have a very black and white view on this matter and it is not surprising that so many terminations take place given that people in authority are advising in such a way around these matters, very probably based on out of date information. Certainly people are not being given a balanced view on what a life with Down Syndrome is like today. My issue is with the media portrayal which remains unbalanced and points to Down Syndrome as something  terrible and debilitating.

Does my son “suffer from Down Syndrome?” Absolutely not. Yes he has an extra chromosome but it is not a disease! To be frank, there are challenges and worries, but then would I say this is unique to children with Down Syndrome? No, definitely not. At 5 months old, our son Jake had major heart surgery and had a rocky time post operatively requiring home oxygen for over two years involving carrying cylinders and also a new baby thrown into the mix (no, I don’t know what we were thinking either!). Thankfully by the time he was 3 years old, he was a lot stronger, was walking, signing and talking. I didn’t want for Jake to be treated differently to his peer group, he began private day nursery at 8 months old and thrived there. I hope that he has enriched the lives of those he met, along the way, I think the place was a lot quieter when he left for school :)

Jake is now 5 years old and fit and well. He attends local mainstream school and has many friends already. He is popular amongst his peers and we have been on play dates and to parties in the few short weeks since he started. His teacher at parents evening said what “a credit he was” to us. She highlighted his empathy and how he looks after anyone who is upset or hurt, you can’t buy that sort of caring nature. Jake is learning to read and is doing so well in spelling and reading simple words by himself before the end of his first term. Don’t get me wrong, we have worked really hard with him (and thanks to his nursery and school staff) for him to recognise his letters and numbers as we appreciate that it can take a little longer for him to commit these to memory. We have learnt that Jake has to work extra hard to achieve the same milestones as his peers and this makes the achievement of such all the sweeter. On Friday he received the school “Reading Star of the Week” certificate which was a proud moment for us. 

Jake and his little brother Joe, now 3, share a very close bond and although there are moments of sibling rivalry, they both benefit from the other’s learning and experience. Joe looks up to Jake and wants to go to school with him, he is learning to read from watching him do his homework each evening. Jake learnt to walk with Joe, they both went through potty training together (Jake was on oxygen and unable to walk when his peers went through this in nursery), they love to play on the trampoline together and run around in the garden and park and are usually up to mischief together. It is lovely to see how Joe is developing into such a caring boy and will undoubtedly be an advocate for Jake when he is older should he need it.

So that brings us to the question surrounding the testing. The media portrayal has been that this advance is something to be celebrated. We can detect Down Syndrome! Hurray. But what it fails to look at in many case, is what exactly is done with that information? Statistics state that 90% terminate and it is likely that the number of terminations for a positive result for Down Syndrome will increase. So how can this be celebrated? Is my son’s life less important than another “normal” child? If I think of all the people Jake has met, I am continually surprised how people warm to him and his effervescent nature. He brightens up any room he enters and he wins people over very easily.

When I found out I was expecting a baby with Down Syndrome, I was shocked and upset. I didn’t expect it and didn’t understand what it encompassed. By the time I had the amniocentesis, I had felt my baby move, it was my child and I was intending to protect them regardless of Society’s expectations for me to terminate. Indeed, it seemed to be a surprise to a lot of the medical staff I encountered for the additional antenatal appointments, that we were continuing with the pregnancy. I remember a conversation I had at the time about “where the line was?”; where do you stop in terms of choosing what your baby is like. Would people terminate if they knew their child was going to have autism, dyslexia or other conditions which are not diagnosed until later in life? I follow a Facebook page which is about a little boy, the same age as Jake. He had an awful accident where a tree branch fell on him in nursery and he was left almost completely paralysed and with brain damage. He was once healthy little boy and now has to have a lot of support to help him. With love and attention he is making very slow progress to communicate and his devoted parents do all they can for their son. That could never be anticipated before his birth. So what about cancer? Would the baby’s life not be worth living if you knew they might one day have cancer? What about if you wanted one sex over another? We begin to stray into the territory of eugenics and the decisions made in Hitler’s 1930’s Germany. It’s not that different if you think about it. What makes us able to decide about a baby’s life as a matter of convenience? Where is the line? Is my child’s life not one worth living in case it is more difficult?

I dread the day where I have to explain this to either of my boys, I think both of their lives are very much worth living and the world is a much richer place for having them both in it. But then I am extremely biased and proud to be so.