One of the first parents that contacted me through this website told me, amongst other things, that it must have been lovely to see Amelie grow and develop until the disease started affecting her but she also told me that it must be equally devastating to have to watch all she learnt disappear.
At the time I didn’t want to rationalise and dwell on it. I thought she said it to me to make herself feel better because her child had hardly hit many milestones. But I know that’s not why she said it, and I knew it then that this was going to be the hardest part of all and so I put the thought to the back of my mind and avoided looking at Amelie’s photos, reading her baby book and tried my hardest to stop remembering.
Clearly I wasn’t dealing with it, and now I see that actually for me this is the hardest, the thought that my baby was disappearing little by little.
When a baby hits milestones, we take note of the date, take photos, post it on facebook as a sign of pride. When they lose them we don’t know that that particular cry, laughter or step was the last one. And so I spent the last year looking back trying to remember when was the last time I saw her doing certain things and got caught up on that instead of looking at her and remembering all that she did do, regardless of how long she did it for or until when.
Now I have Grace and at 3 and half months she can do a lot more than Amelie can at 3 years, and yes it is extremely painful and awful to see this difference, to realise how affected Amelie is every single minute but it brought something back to me, I can look back now.
I have finally opened iPhoto on my laptop and gone through all the 1’000+ amazing photos of Amelie and some videos and found myself smiling, because I can see this is the same Amelie that I am looking at through the video monitor, I am not sure what it is, but there’s just something in her that TS will never be able to take away.
And so I have decided to make this blog a lot more personal at times and I will be posting some of my favourite photos of Amelie, I have realised that I need to find joy in the past as well as the present like any other parent does.
The decision to have Grace was not an easy one, those close to us and that are affected by TS know the risks of having more children. But apart from that there is also the conscious decision of having another child, of the burden that it could pose to be the sibling of a terminal ill child, how to raise a child after being struck by grief and going through it. But there is also the element of what many think – ‘the replacement’. I am certain it has struck many people’s minds that this is what we were doing, it’s not. No child can ever ever ever be replaced, and certainly not Amelie, no matter how many children we have, but Grace has brought me something unexpected – the joy to look back!
To those who find themselves in a difficult situation it does not take long to realise that ‘divine justice’ is nothing but a myth! Karma is nothing more than a fancy word for certain situations in life are so tremendously sad that it is impossible they would be a ‘pay back’ for anything else.
Those who live them also soon find out that everything else in life does not get easier just because they find themselves in further difficulties than the majority. Boilers break, work can still be upsetting, the train still gets cancelled… these are everyday hassles that don’t spare anyone no matter how easy or hard life gets.
I get this, I don’t expect the universe to change for me or for us, it is the way it is and it can’t be helped. I do expect however that touch that sets us apart from animals and all living beings – HUMANITY!
I will not go into detail into the story I am referring to as the parents themselves do it a lot better – Luca Loves Life Appeal – in a nutshell, Luca is a little boy who suffers from Tay-Sachs, and by now we all know too well what TS does to children. Luca’s big sister Ella was placed in a school that is too far from their home to avoid having to pack little Luca and all his equipment in the car to take and pick up Ella from school. If Ella had been placed closer to home then her neighbours could help with the school run on those days when Luca is unwell and avoid him having to go through rain and cold when getting in and out of the car – as Luca is fortunate to have responsible parents that will not leave him in the car waiting on his own!
This is a simple story really, the council was obviously not aware that Luca was so unwell and placed Ella in the school which was the 3rd choice. One would think that just the fact that the parents had a child diagnosed with a terminal illness in the beginning of the year would be enough for the council to cut them some slack and bend whatever rules they need to, but unfortunately after appeals, tv appearances, several media coverage and a tonne of paperwork produced by the parents who already have very low reserves of physical and emotional energy, a place for Ella was still denied on the grounds that health problems are no grounds for appeal… so what are the grounds for appeal?
Upon receiving the news that another appeal had been obtained I sent a message to the parents to suggest that they take Luca to this appeal so that perhaps a better understanding of Luca’s situation is passed on, to my great shock the parents replied to say that they had already done that on the second appeal.
And so I ask the panel of Birmingham’s LEA that had the deciding vote on Ella’s placement if they really looked at Luca? Did they not see that Luca is not moving, that he has a tube down his nose to feed him, that he had to have suction so that he does not inhale secretions to his lungs, that he has seizures and he is not even two years old yet!
And then I ask myself if these were humans that sat on that same room with Luca and his parents, that read through what Tay-Sachs is and what it does to children… I am certain that if they are humans they do not have children, for any parent would sympathise with this family and do the humane thing and bend the rules!
I will make it even more simple, I would like the panel responsible to close their eyes and think how it would feel to be on Luca’s shoes, would they like to be moved around from a car to a pram everyday when on top of all he has he is suffering from yet another infection as so often occurs on children with Tay-Sachs!
I wonder if the members of this panel have never taken a day off due to sickness or their children’s sickness (although I sincerely hope they have none!) and how would they have felt if they were made to get themselves (or the children I hope they don’t have) in the car and drive to work or school – not acceptable, right? Well, this is what they are doing to Luca every single day!
Finally I would like to say that I thought that the world was made of rules that we (humans) created and that rules are there so that they can regulate, not so that they can harm, hurt or kill. Rules are what makes the world a better place, a space where all people live in harmony – it’s called society! I am guessing the panel of Birmingham’s LEA is not educated in sociology or truly understands what this means… and as I know they are humans and not robots they should be able to see this case for what it is and do the humane thing!
I would like to ask everyone who has read this to forward this case to their friends and family and to write to show their support to Luca’s family by writing to Brigid Jones below:
You can see the entire story at Luca Loves Life Appeal page on facebook.
This is really important, please help!
Everyday you wake up and your day ahead will be full of questions – What should I wear? What should I have for breakfast? Shall I go out tonight?
Having children presents you with a whole new set of questions – What should I dress them in today? Where should we go out ? Questions become a whole lot more exciting and interesting. You begin to think towards future questions like – ‘I wonder what they will grow to be: a teacher, a pilot, a doctor, famous? Will they be popular in school, intelligent? Will they get married and have children of their own?’ – These are all questions which me and my husband faced when our darling baby boy Archie was born. Two years on and those questions have changed! Changed in the worst possible way.
Archie was taken poorly last week. After a few manic hours in Cardiff’s A & E we were told he had developed pneumonia. While we watched with heartbreak as around 10 to 15 doctors worked on Archie one doctor approached us and asked – ‘What is your end of life care plan for Archie?’ – complete and utter devastation consumed us both. We know the time will come when we have to let our little boy go, but really so soon? This was very unexpected.
During our week stay in hospital while Archie recovered we knew the haunting question we were faced with days before had to be addressed. We knew we had to discuss this along with others like, where we would like Archie to die, and how much we would want doctors to intervene with keeping our Archie a few months longer. These are the toughest most heartbreaking questions any parent could ever imagine to answer or even contemplate. How does any parent answer such questions? We did so like some sort of robots. I didn’t cry, I answered as if it was the most natural thing in the world. Why? How? I don’t know! I really can’t answer that. There are so many hours in the day where I break down and cannot bear to cope any longer but there are other times when something takes over me and leads me in a very robotic manner.
We cannot plan for the future with Archie like most parents do for their children but we can plan to give him the most loved dignified special ending possible. When Archie tells us he wants to go and sleep with the angels we have planned to make him comfortable and stay by his side until he takes his last breath. We want family and friends to be able to send him off with love. Archie will know he is and will always be loved.
People reading this may wonder how on earth can I write and talk about this so calmly. Some of you may wonder why am I even telling you all. Please trust and believe me that it is not done without complete and utter devastation and emotional and physical heartbreak. I had a nightmare the night after we were faced with these questions. The nightmare involved me losing my child. I woke up as from most nightmare to hopefully be granted with a sigh of relief however I remember I am living this nightmare. There is no waking up from it!
Being a parent to a terminally child leaves you no choice but to cope with what has been dealt to you. It simply comes down to you either cope or you don’t. Myself and my husband have decided to cope. It clearly doesn’t come without its struggles. I have learnt through this journey that there are days when I don’t want to cope anymore , I get days where I don’t want to see anyone and I simply want to cry and hold my hands up and give into the strong image me and my husband so often portray. I have learnt that I am aloud these days and I will have them I just might not show anyone.
Why am I telling you all this then? My reason is I want people to understand life is extremely hard for us and all the other families in the same situation.
We are faced with the most traumatic, heartbreaking questions and situations ever imaginable but we deal with them.
We deal with them with some inner strength you might feel you don’t have. Please don’t tell me you could never do it because the hard bear fact is if it were your child you would.
Why? Because you have to.
Please, please remember that for all that bravery and toughness we portray in front of you the public, behind closed doors our hearts are aching, we are broken, we are still human after all. Be patient and gentle with us as we deal with the situation and questions simply because we have too, not becasue we want to.
Recently, four very special ladies from Clippers hairdressers in Thetford put themselves through weeks of training in order to complete a team tri-athalon on behalf of Isabella.
They asked their customers, friends and families to sponsor them so that Isabella could get to enjoy some more happy times and we get to make some more memories with our precious daughter.
They raised a phenomenal amount of money, so much more than we could have ever imagined and we will be eternally grateful to them for all their hard work and efforts.
We chose to spend some of the money on a five day break at our local Centreparcs which is only a few miles from us. Perfect, as Isabella doesn’t travel too well and also our nursing team could access the site if necessary.
We took my special weenie auntie Bev with us which was a great help to James and I as she is very patient and helps in any way she can.
We were blessed with beautiful weather which meant we had loads of time outdoors in the fresh air exploring the vast expanse of forest and lakes.
We took Isabella swimming every day which is one of her most favourite activities and we got to go on the rapids, slides and whirly pools too!
Isabella’s daily routine means that she has to stop for tube feeds, medicines, treatments etc every couple of hours. This meant that we got to visit practically every restaurant and cafe that centreparcs has to offer and we were delighted by the warmth and friendliness of the staff we encountered, letting us get on with our procedures without rushing us or making us feel awkward.
The food was fantastic and it was a good job that we had to walk everywhere or we would be enormous now!
Isabella got to experience ten pin bowling, crazy golf and even went to her first disco! She had a great week and stayed very relaxed the whole time as did I after my afternoon at the spa with auntie Bev!
Janes didn’t miss out, he was happy to put his feet up and catch up on a little well deserved afternoon nap!
We can’t thank Lydia, Sally, Michelle and Sinead enough as they have really achieved what they set out to do. Isabella had a very happy week and we made some fantastic memories.
As I walk my daughter in her pram through the park or on my way to run errands or even to appointments you walk past me everyday – you have all sorts of hair colours, heights and shapes. Some of you have children in their prams too, many are riding their scooters and some are on foot, there’s the odd one of you that does not have a child at that instance or that is carrying a newborn. But there is one thing you all have in common – the look of pity you give us!
If my daughter’s face was a mirror instead, you would see just how awful and upsetting that look is, and perhaps for just one second you would realise that if someone gave you that look even just once you might not be brave enough to ever leave the house with your child again!
But I am not you, any of you! I have never given such a look to anyone who is sick or disabled, children or adults. In fact just last week because I gave a truthful smile to a young women who lives down the road who I think suffers from cerebral palsy she stopped and asked me to help her with her shopping bag, which I did, and then she said – ‘Beautiful children!’ And so I repeat myself in saying: I am not like you who freely give looks of pity without thinking twice. I, like that young woman are better than you because we see beyond what you can see and we go on with our lives without fear of being judged, despite knowing we are all the time!
In normal circumstances, where my daughter would be healthy, you would probably smile at us and at some stage strike conversation. As we go to the same park we are probably ‘neighbours’, you would want to know more about us, set some playdates and coffees, perhaps even lunch and you would hope that one day you would be invited around to us so that you can see our house, how we live and what we have. Our children would be friends and play together and who knows, maybe we would become friends too and so would our husbands and a lifetime friendship would arise from that.
But our circumstances are not normal, my daughter suffers from an illness that has left her disabled and one day it will claim her life. And so you look at her and your own simplicity and fear makes you act like all simple and cowardly people do – you pity us without knowing what you are pitying us for!
If you were to smile at us or strike a conversation as you would in normal circumstances you would find out what we are all about. I would tell you openly about my daughter, what she suffers from but also all that she is and has achieved. Your child would most probably be drawn to her, as for some reason most children are and she would bring out the best out of your child at that moment as she usually does. If we were to sit down and have a coffee I would want to hear all about you and your family, I would play with your child because I enjoy children and I have a very different way of playing with my own. We might become friends, we might go to the park together on those days when your child is suffering from cabin fever and all you want is a bit of fresh air and an adult to talk to for 10 minutes, I would cherish that… but that’s not going to happen.
It’s very simple, I believe that my daughter deserves a truthful smile not pity nor that quick turning of the head in embarrassment, the wish that you hadn’t looked splashed all over your face. And so on the contrary to your quick assumption that you should pity us I am the one that has the right to judge you – I think you are simple, selfish and ignorant and for that I am the one who will never smile or strike a conversation with you. And you will never learn, because that look you gave us stops you from noticing just how beautiful my daughter is, how long is her hair, what she is dressed on, how she expresses herself differently, how she enjoys the wind on her face, how she would make an immense effort to reach for your child’s hand.
I am also better than you because I know why you do it (and you don’t!) – fear! Fear of facing it, fear of facing the fact that not every child is healthy. And despite this horrible sickening look you gave us I would never ever ask you to put yourself in my shoes, they are too hard, too slippery, too hurtful for you, no I wouldn’t want any other parent to have to feel and to live this but I have to say this – we have had hundreds on these looks by now and odds are that one of you at least will have to fit some very uncomfortable shoes at some stage and I hope that you become like me and the young lady down the road, I hope that if it ever comes your way you will grow out of your ignorance and are able to take your child out to the park for there will be at least one parent that will truly smile at you – me!
And for those who will never learn, here is something I can tell you about my daughter: when she was able to smile without any effort she smiled at everyone! It didn’t matter to her if you were ugly, dirty, nice or grumpy. She can’t smile so often now because her brain is being damaged by the second, what is your excuse?
A long time ago I read somewhere (probably a fashion magazine and therefore this is absolutely made up psychology) that couples tend to get along better when they face a difficult situation than they do when all is easy and simple. The logic behind it was that when a bad situation arises couples tend to stick together against it, if there is no situation usually they loose perspective and turn against each other.
I am not sure if this is particularly true, in fact I don’t really believe in “general psychology”, it could happen either way to those who have difficult situations and to those lucky ones who never face one. I think the difference is in the individuals that make the couple – in fact I believe that most things in life lie with the individual in question!
I have the example of a very strong relationship – my parents will be celebrating their 50th wedding anniversary next year and theirs is a relationship that has survived many hardships – war, distance, financial troubles, diseases and losses; but it has also enjoyed many happy moments – 4 children, 5 grandchildren, and many happy moments. And this is a fair example that it’s all down to the individuals.
This brings me to my own relationship with Daniel, I don’t take it for granted. I never have and since Amelie has been diagnosed with Tay-Sachs I certainly do not take anything for granted and this has reinforced my appreciation for Daniel.
When choosing a partner one tends to go for a type, for a look and for the common points, sometimes even for their strengths that end up balancing our weaknesses. This was probably what attracted me to him (at first sight was the fact that he smoked and was a rare british man drinking espresso after dinner!) but what is more extraordinary is what I have come to find since our own hardship with our daughter began.
No one looks at their boyfriend and thinks – ‘If we were to have a child that was disabled and/or had a terminal illness how would he react? How would he cope?’ – it’s not something that anyone thinks or even wants to consider, and I didn’t either. But now that we are where we are I know that I chose the right boyfriend to be my husband and mostly the right father for my children.
I always had pretty high standards when it came to fathers. My father has always been absolutely outstanding to me and to my siblings and having come from a family where his own father was pretty much absent I value his love and dedication to us even more. I never did think that I would find someone so devoted and loving towards their children and I thought that perhaps this was something where I would have to lower my expectations and compromise but in fact – and not taking any credit away from my own father – Daniel has been the most loving, dedicated and devoted father that I ever thought possible!
Daniel and Amelie always had a very close relationship, they look alike, they like the same things, they have always been two peas in a pod, I think a lot of my friends who are also mothers secretly think that it must upset me that Amelie has always undoubtedly been a “daddy’s girl” but the truth is that it actually always fils me with love and joy to watch them together. And now it goes deeper than that, Daniel goes to extents that I don’t think many men would, he totally looks after Amelie on his own when I am at work and he does absolutely anything for her, no matter how big or small or how many times a day he has to do it. He gets up really early to make sure she has her feed on time whilst organising his day around the tasks he needs to get done for the charity and manages to fit in a training run to be able to keep on running a marathon every month – all of this comes naturally to him because of his love for Amelie.
And so I seat here and think the other way around – “How would some of my previous boyfriends react to this situation?” – certainly not with the same strength and devotion, some better than others for sure, at least one would have thrown himself from a bridge at this point.
But I cannot forget that both Daniel and I are carriers of Tay-Sachs, a very unlikely and unfortunate coincidence, in fact we would have more chances of winning the lottery than to have met and have a child with Tay-Sachs, given the fact that we are from completely different ethnic backgrounds, countries and that by chance we both moved to London.
Yes – unlikely… the carrier of a rare gene… certainly a rare individual, the kind that is hard to find, the type that no one would think might be essential at some stage in their lives, the most outstanding father I have ever met who certainly surpassed my expectations – so rare in so many ways!
As I was saying – I am sure it’s the individual that makes life happen in a certain way…
There were many moments throughout the Olympics that made me get a lump on my throat – Jessica Ennis getting her gold medal, all the unexpected medals and the sense of achievement and pride of the athletes, at the opening ceremony when the olympic medalists waived their right to carry the torch on behalf of young athletes and let them carry it instead, Tom Daley fighting for a medal as if life itself depended on it after going through such a traumatic year with the loss of his father, the advert for the paralympics – the Superhumans – those who have limitations and challenges beyond belief and that push themselves to the limit and make a point of living life to the full!
All of these people make up for those that always make me wonder – ‘How did he/she make it into adulthood? Is it for the divine purpose of hurting others?’ I am talking about the Breiviks, Ghadafis and every other tyrant in the world.
Today I looked across to Amelie, sitting on her special blue chair (an attempt to keep her cool as she doesn’t deal well with hot weather) and I have realised that at 33 months and despite all her limitations, set backs and challenges, she has achieved and accomplished more than many people in a lifetime!
Amelie is not able to walk or run but she has inspired her father and close friends and family to run marathons to total more km than many will ever run throughout their entire lives! And now because of her hundreds of people have signed up to take upon themselves to run 10k everyday, in her honour and in honour of other children that like her, Archie, Isabella and Luca cannot run – The CATS 10k Challenge, 13 in 13.
We have never even contemplated that one day Amelie could reach any mountain tops, but she has! – ‘Another mountain another thought for Amelie’
I certainly never expected her to be a good cyclist as she wouldn’t be getting that skill from any of us… but cycling she has inspired, 600 miles in 6 days and climbing over some of the toughest mountains in France! – Ride2Recovery2
And at her young age golf would definitely be a challenge regardless of the circumstances… – Charity Golf Day
But Amelie has achieved, inspired and accomplished a lot more than just the above.
She cannot talk or read and yet it was her determination to hang on to her abilities until they were no longer possible that took me and Daniel to sit through hours, days and weeks of research and paperwork in order to establish The CATS Foundation. We know that Amelie’s kind nature meant that she would want a treatment to be found for other children in the future, that she would want to help other families and children in the same situation as us, that if she could talk and read and grow into an adult this would be her goal. And so we are her eyes and voice and made it happen.
And through this whole process we made friends, friends that we would have never met otherwise, people that are also Superhuman in their own way, for they too dedicate their lives to something a lot bigger than the ordinary:
- we have met Ken and Julie Bihn, an extraordinary couple who set up the Cure Tay-Sachs Foundation in the US, they were our first contact in our ‘new world’, having set up the foundation in 2007 they have tirelessly and relentlessly raised money and awareness for Tay-Sachs ever since, their work in honour of their 12 years old daughter Dakota has allowed for research to develop to stages that were never thought of 10 years ago. We took a lot of inspiration from their work to start The CATS Foundation.
- through Ken we were introduced to Professor Timothy Cox at Cambridge, another outstanding human being who has dedicated his career (and probably most of his leisure time) to the study and research of treatments for lysosomal storage diseases affecting the brain, diseases like Tay-Sachs and Sandhoff. Professor Cox, or Tim as he insists we call him, has not only astonished us with his perseverance and passion for his work but also for his compassion, patience and understanding towards the children and families affected. He has been involved in the charity since birth and keeps us updated with the current research progress and any information we need.
- Julia Ogilvy was mentioned to me by Professor Cox as a guest at our first meeting. I didn’t know who Julia was and I couldn’t quite understand why would she be attending a meeting about Tay-Sachs, until I researched and found that Julia’s life had changed dramatically since two of her very close friends’ children were affected by the disease. In fact I should rephrase that – Julia took the decision to change her life dramatically! I felt I knew Julia before I met her, through her book ‘Turning Points’ I got to understand what a remarkable woman she is and how others have turned very serious and difficult situations in their lives into something greater than most would have done in the best of situations. I must confess that reading Julia’s book at that particular time was all the therapy I needed…
Perhaps it is true that good people attract good people, for that is certainly what Amelie has done!
Of course I would prefer not to have met any of the people above, nor to have extensive knowledge of Tay-Sachs, or to have started a charity, my first preference would always be to have an healthy child, but that is not the reality.
Lastly I know that we have a little Superhuman as we watch the immense effort and concentration that she has to put on to hold her little sister’s hand, but she still does it every time they are next to each other!
It has been a very long time since I have sat down to write on Today Was Not About Tay-Sachs, it’s not that these past months have all been about it but it certainly becomes more and more difficult to get away from it.
I don’t tend towards negativity or depression, this is not how I see life, it’s not how I was raised, I believe that life is what it is and that it’s up to us to make it work.
One of the hardships of being a parent of a terminally ill and disabled child is that we suddenly live in a bubble, not by choice, purely by default. Our children are different and so we have to be different too, it’s not a choice it’s a necessity. But there are choices that we consciously need to make and that most don’t have to, they think they do but usually just live in oblivion and limbo.
At some point, in the life of the parents of a child like Amelie (regardless of the specific condition) comes the time to decide how to deal with the situation and there are only two options – to be or not to be happy! Not with the situation or that our daughter has a disease, to be happy in general, to be a happy family or not. Most would say you can’t – a fair assumption. But would we have chosen to be unhappy and have Amelie suffering from a terrible disease and have a dreadful unhappy life on top of it? No, we wouldn’t because Amelie is our child, we love her, and ultimately this is happening to her. When we made the decision to be Amelie’s parents we took onto ourselves to look after her, love her, care for her, we didn’t know Amelie had TS, but Amelie didn’t either and did not ask to come to the world and so we love her just as we would if we had a perfectly healthy child.
Dealing with life outside the ‘bubble’ is increasingly hard, I would say in proportion to how different our own situation becomes. It has been a while now that I look at life outside of our bubble and become shocked and upset about the lack of perspective of those living on that side and more recently I have had parents in the same situation commenting on the same fact – why do parents of healthy children don’t value their time with them? Why do they complain openly and so much? Why do some make parenthood sound like a nightmare and battle that they had no idea they were getting themselves into?
I have many times seriously considered closing my FB account purely due to parents’ accounts of their days with their children. I ask myself – ‘Have you never seen or dealt with a child before you decided to have your own?’ – How can they go on and on (usually on a daily to weekly basis) about how tired and exhausted they are and how they need a break, and oh, let’s not even go into the ‘dreadful’ summer holidays… how dare they allow the children to have 6 weeks off school to play and enjoy themselves and spend time with their parents? Has anyone ever seen a boarding nursery where you can ship them off as soon as they start talking/walking? I haven’t! So what is going on here? Why do people decide to have children and then spend their lives moaning about them and seem to just be desperate to reach the end of the day (the kids bedtime)? Is this what being a parent and enjoying your children means? No, it’s not!
I have carefully judged this ‘phenomenon’ from two perspectives – the one from my own upbringing (a healthy child) and the one from parents like us and those we meet at our hospital stays.
I have never heard my mother moaning about a day with us, she was always attentive, she always got her own work done and played with us, paid us the attention we needed and educated us accordingly. Perhaps my mother was not neurotic about having a little child with her because she knew that children need love, care, attention and that it was her choice to have us, not the other way around. My earliest childhood memories are of my mother teaching me how to colour on the kitchen table while she was making dinner or doing the ironing, it doesn’t really matter what she was doing because what I can remember was that she was paying attention to me without indulging me. I remember she always spoke to us a lot (as she does!), I had a little black board where I was taught how to write and count before I went to school. She would take me out and involve me in her shopping and take me for an afternoon snack. And when dad came home we all sat down at the dinner table and had a lovely meal and spoke about our days – we were not pulling our hair or screaming or overtired, we were looked after with pleasure and so we were pleasant and happy children! So what is my mother’s (and others like her) secret? Is it perhaps that Facebook didn’t exist at the time and so she didn’t have to set aside the time to go and update it with what she did that day? No, I don’t think so. She chose to have children and to be happy, very simple! And so she made it work for her and for us.
And then we have the parents that have it a bit more complicated… we have John’s mum for example who was staying at a bay across from us at hospital. John is two years old, one of twins, they are four children in total. John had a stroke (yes at the age of 2!) and he had been in hospital for over 3 months! John’s mum stays with him all day, everyday! She comes in after she takes the other children to school and while her husband goes to work. She places him on his special chair (I will spare the photo of this particular equipment), she feeds him via his tube and little spoonfuls of cereal to try to get him back into eating orally, she baths him, changes him, sees and speaks to the registrars, sees and speaks to the specialists, she takes him to see the play specialist, she takes him to physiotherapy and occupational therapy, she feeds him through the tube several times in between, she plays with him, she allows him to watch a little bit of TV while he has dinner, the other kids and the father come over to visit at 6pm, they all eat NHS food, they give a cuddle to John and sit around his bed, the kids and dad go home, mum stays and puts John to bed, she pulls the tiny bed out and goes to sleep again in what it is a very uncomfortable bed, by now managing to ignore all the beeps and noises that go on the ward as she is tired and has been there for over three months… all day, everyday! John’s mum has never once complained to me about John and all the work she has with him, she certainly does not have time to go and moan on facebook, she hardly has time to see her other children or to eat or have a proper shower. And yet she always has a truthful smile to him, full of love and hope, despite not knowing how John’s condition will improve and not knowing when they will leave hospital. This is just one example! The ward at Evelina Children’s Hospital in London is always full, children of all ages, from newborns to teenagers, children with brain tumours, who had strokes, children who have very rare diseases and severe disabilities, children who are still being assessed but we know by now that if they are on that ward the news will not be the best, terminally ill children, children like John and Amelie! And the parents? Yes they are there with them, all day, everyday just like John’s mum, no bedtime ritual with books, no wine on the sofa to unwind, no facebook to vent!
These are the routines, the lives, the bubble of parents like us and I am only mentioning what we have to do, not what we cannot do due to our children’s limitations. But given the choice I would prefer to be running after a 2 year old rather than to be carrying her and placing her in a chair like John’s, or to be taking her to the park and seeing her climb up a tree instead of going around with her in the pram hoping that she is enjoying the wind on her face, or even giving her a time out for being naughty instead of pulling out the suction machine to make sure that she does not get another lung infection that will lead us to another hospital visit.
I have now come in contact with many parents who have children with severe conditions, some with Tay-Sachs, some with others, they all seem to have chosen happiness, to love and care for their children and give them the best time possible so perhaps we are not the ones who live in a bubble… the bottom line is that nobody is born with a ‘health warranty’ and all it takes is a quick walk down a children’s hospital ward to understand this, children are the best in the world and they deserve to have happiness as the only choice!
My good friend Danny How (who is doing the 13 marathons in 13 months challenge with me for The CATS Foundation) send me an email the other day titled “Another mountain, another thought for Amelie”. I opened it wondering what it could be about as his normal emails rarely have a title and are usually full of training stats.
What I saw was amazing – there were pictures of a someone at the top of two mountains with a sign saying Amelie.
After speaking to Danny it turns out that a friend of his, Jose, has a friend called Luis who was really moved by Amelie’s story and how she is coping with Tay-Sachs. As a keen climber he now carries a sign with Amelie’s name up each mountain and takes a picture of it at the peak! As you can see in the pictures they aren’t exactly small mountains either.
Patricia and I are really touched that someone who we don’t know is thinking about our daughter and doing something quite extreme in her name. Amelie may never be able to climb a mountain, but in spirit she is there with Luis every time he gets to the peak. Thank you for doing this and thinking of her!