Posts in Category: Opinion

You are not terrible!

A few days ago I came across this blog post via a friend on Facebook. I read it while I was putting my youngest daughter to bed and it stayed with me –  To parents of small children: Let me be the one who says it out loud - I wanted to let Steve know that not everyone feels like him, that he is not a terrible parent just like he says he isn’t but he is taking a risk…

I agree with Steve in many ways. I agree that those that go to work are not terrible parents, I agree that some parents are luckier than others on their children’s eating habits, I agree that being a parent is tiring because it is not a controlled situation – children wake up in the middle of the night, they cry, get upset, want to play when they should be asleep, need feeding, need changing, need dressing – need, need, need!

Here’s the thing – Steve, an adult, who seems educated and actually a good person spent 7 years trying to be a parent, did he think that children are born already taught?

Steve, do you not have your own habits, peculiarities, demands? Your son, who like Steve Jobs (as you mentioned) is so peculiar, would he have just been born like this? And so what? So what if he wants his plate or cup or whatever in a certain place? If this was your boss (since you call parenting a job) would you be writing a blog about him or would you be worried that he would read it and give you the boot?

No you wouldn’t Steve, you think it’s ok and funny and acceptable and NOT TERRIBLE to moan about your children because they are not going to sit you down and give you a run down of how you are doing your ‘job’ and do an appraisal on you! I’m certain that, like any other human being, you will have your good and bad points and your children accept them and love you unconditionally and they wouldn’t do a drawing of you at your worst.

I can see clearly that you love and are devoted to your children and that you are not a terrible parent but there’s something else you are doing – you are taking your children for granted! You are taking for granted their existence, their being, them coming down to you every morning, them being able to be themselves – demanding, peculiar, mischievous but also in your own words ‘delightful’.

I’m not going to hit you with the odds here – you are all fine and  hopefully will make it to old age and your children will be healthy and look after you (and I sincerely hope so) and when this happens and you are old and demanding and set on your own ways I hope none of them sits down to write a blog on the demands and how tired to the bone they are from looking after you. It would make you sad, I am sure.

I am going to tell you that some parents, like myself and so many others I know, have very different demands to meet for their children, they include medicines, feeding tubes, physiotherapy  doctors, hospitals, seizures, operations, grief and loss.

Parents like us are not ‘unlucky’ or so ‘rare’. The actual condition that affects our family is indeed extremely ‘rare’ but I have been to children’s hospitals a few times now and I can tell you that I have seen 2 years old as well as 13 years old who suffered strokes, 11 years old who had brain surgery, new borns with severe pneumonia,  a boy who turned 18 with a metal frame around his face and now incapable of moving at all, his duvet has pictures of him playing rugby… These are children of parents who wish they had their children being peculiar and demanding in the natural way. They are parents who are exhausted for the lack of normality, the worry, the anxiety, the fear for their children’s lives. They are parents who regret those times when they have ever felt that it’s not terrible to look forward to bed time. I would invite you, Steve, to read an old blog post of mine that touches this subject – We chose happiness instead. The cruel reality is that it can happen to anyone, to any parent, to any child. It doesn’t matter if you are religious or not, good or bad, if you have had a difficult life or faced hard times. I can tell you, because I know a lot of these parents, that it happens regardless.

I have a younger daughter, she is little still, and I know that she does not suffer from the same disease as her sister does, this is a relief of course, but it is not a guarantee! I don’t take her for granted, ever! I don’t wake up everyday thinking that I might lose her as I know I will lose my eldest, this is not what I am suggesting to you either, but whenever I have to get up for the 20th time because she is going back to that wire that is dangerous or am struggling for her to eat something that she devours when her dad is feeding her, I stop for a second and remember that I am her mother, I wished for her and conceived her and by bringing her to the world it is my ‘job’ to guide her, teach her and deal with her peculiarities, her demands, her being.

Being a parent is many times compared to a job (just like Steve does) and if it is to be so then it is the most important one in anyone’s career as it affects our children’s lives. If you have the job of a lifetime you work hard, you work long hours, you are proud and you tell everyone what you do. You won’t complain about your boss openly as you are too afraid to lose it, it is precious! Parenting should be all of this and more but most importantly not one to be taken for granted!

 

 

 

 

 

S for Special not for stupid!

Grace is 8 months old and understands that he sister Amelie likes to have her hand being held

Grace is 8 months old and understands that he sister Amelie likes to have her hand being held

 

My dearest (I think she wouldn’t mind me calling her friend) Deborah has just posted the following on Facebook:

‘I am thinking of making Isabella a badge to wear, it would say the following:

“My name is Isabella. I am 4. Past 4 and 1/4 and heading for 4 and 1/2. I can hear you. I can understand you. I just cannot talk to you. So please do not talk to me like I am a baby!!!

Thank you”‘

And I understand exactly how she feels. To be honest I have always found baby talk irritating anyway and it usually results in kids with a winy voice… but I shall not pass judgement for this is exactly what I’m trying to ‘raise awareness for’…

Instead of going around it the usual way, and explain what Isabella has and how she is a little girl who suffers from a horrible disease I’m going to try to bring it closer to home in a really easy way.

You, who are reading this, able bodied and hopefully healthy, try to imagine for a full 5 minutes not to be able to talk, or walk, or see clearly. So close your eyes if you must, start by asking someone to talk to you as if you are a newborn, remember you can’t express yourself via language or movement, let them go on for a bit, take it seriously, please.

Do you feel like an idiot yet? Is it nice? Would you rather this person wasn’t talking to you? If this was life, if you suffered an accident or had a terrible disease that lead you to such disabilities would this be the way you would like to be treated? No, I am certain no one would! I’m certain you would, if this exercise lasted long enough, break your silence and tell this person to ‘shut up’! But Isabella can’t, so she won’t and if she could she would probably be too polite to do it because she is lovely too!

No one chooses to be ill, to have disabilities, to be unable, but it’s everyone else’s choice to treat people with respect. I can assure you that Isabella and those who suffer from disabilities and limiting illnesses will never be disrespectful to you, that if they could talk what goes on their mind you would be astonished at their wisdom and their beautiful words, because they see the world differently, they don’t have malice, prejudice or any pre made judgements.

Next time you come across Isabella, or my daughter Amelie or another child or adult with special needs treat them with the attention and respect they deserve, touch their hand, stroke their head, read them a book, if you are unsure how to act just ask their carer, ask what is acceptable, if they can hear, see, what they like and don’t like, just as you would with any other child. Failing to do so you may risk them thinking that you are an idiot…

You also wouldn’t want to make a parent feel the way my friend Deborah and I many times have, would you? It’s a lot worse than people staring at your child having a tantrum. Our children are special they are not stupid!

I am going to take a risk and speak on everyone’s behalf here – Isabella, Amelie and the other children with special needs and their parents appreciate everyone that makes the effort and who shares this message.

Thank you!

 

Forgive us for not falling into misery…

Emily Rapp is a writer, she has always been a writer, it is her profession. So when I read the article – Obnoxious Questions People Ask Me About Writing About My Dying Son - I was beyond astonished that she had been asked those questions, but only for a second..

I first ‘met’ Emily shortly after I started this blog, she emailed me actually and we had a rushed exchange of emails. Emily hasn’t stopped writing, she is a writer after all, and I am wondering what the ‘gentlemen’ who asked her ‘Don’t you feel strange about making money off your sick son?’ were referring to? Was Emily, as a writer and mother, supposed to bottle it all up and not do what is the most natural thing to her? Was she supposed to write about the birds and the bees and pretend that she does not have a terminally ill child? What actually bothered these ‘gentlemen’ so much?

In a nutshell it is probably the fact that Emily is not miserable in the literal sense of the word. Emily did not go to her family doctor, asked for anti-depressive medication, turned into drinking, lost her house and lives from government benefits. Yes, this is how ‘gentlemen’ of this kind and other people perceive those who have sick and terminally ill children. Why? It’s just not something they really want to think about or deal with – so it would be easier if Emily was tucked away and had never raised any awareness to the fact that her child is ill, what their life is, what she feels towards it and actually doing the public a service by making a rare disease more known.

I wonder if these so called ‘gentlemen’ wrote to the Beckham’s and asked if they ‘felt strange’ for making money out of their son’s modelling for Burberry… and yes, the money probably did go to his trust fund. The fact is that he is underage and modelling is a job, so one could argue that too! No I bet they didn’t, because it is not an uncomfortable situation.

And this brings me back to me only being astonished for one second at this article, because memories of attitudes and words and questions came running to my mind on how people are able to say and act in the most insensitive and inappropriate ways.

I don’t think we are special, I never have and indeed I would, very much like Emily, give absolutely anything including my life to save my daughter, nothing is more important than her.

As Emily turned into writing about her son, which is what she does best. We turned into starting a Charity in the UK specific to Tay-Sachs. Did we do it for attention? No. Did we do it to be thanked? Definitely not! Did we do it to stress ourselves? Absolutely not! Did we know it was going to be a challenge? Yes! So why did we do it? Because we did not want other people in the same situation to feel what we did, we did not want others to leave hospital with an awful diagnosis and only have wikipedia to give them the info and to only have really good charities in the US who could support them. We didn’t want families to think that they were alone because we knew they weren’t.

One would think that perhaps in this situation we would not have heard atrocities such as what Emily, very undeservedly, heard. But yes, we have!

We have people questioning and commenting on how I am the one who earns a living and Daniel doesn’t. And more recently I even had someone trying to play the ‘my husband got me this really expensive gift’ card, yes shocking, but true!  The reality is very simple – I really could not care less what other people think on this matter or what they have or do not have! To me is very simple – my husband looks after our 3yrs old daughter and helps her with absolutely everything she needs, and she needs a lot of help. He also runs a charity pretty much single handedly, giving all his hard work and time to other children and families in the same position as ours and successfully raising awareness for a disease that we would not wish upon any one. So if someone delivered Brad Pitt plated in gold and encrusted with the Crown Jewels to my front door, I still wouldn’t swap!

We have people telling us we cannot protect our daughter from everything  – Well you are right, in fact we cannot protect her full stop. And this is the issue here, isn’t it? I would like these people to come back to me once they close their eyes and imagine what it would be to have to discuss and decide wether to place their own child on a ventilator or not when the time comes, not if the time comes. This is the difference, the time will come. So yes, I will protect my child how I see fit, my apologies for the inconvenience this may cause to others.

‘I’m doing this for you!’ – Well then don’t, please. If you needed a transplant and I was a match I would give it to you, I would certainly not come back to you and claim on my kidney or bone marrow, or keep on bringing it up how ‘I did it for you’. It is very simple, if you are truly someone who cares for us you do what you want to do, a lot or a little, every bit counts, and we are very grateful to those who are on our side, but doing it for self gratification or to be thanked it’s certainly not the right reason to do it.

I suppose it comes with human nature, there is always that little bit of envy that people are doing well in some aspect of their lives. People like to think and feel that they are the best and when someone does something good some cannot help themselves but to take a dig at what they may perceive as a ‘success’. Well, let’s be perfectly clear here, that for us success is not a word in our vocabulary. Being parents is the most important job anyone could have and ultimately we are failing our child for we cannot save her or protect her from an illness that we unknowingly inflicted on her  - so to who once wrote ‘we feel you have set yourselves to blame us for what is happening to you’, we don’t, we feel you are the most selfish and uncaring people, but if there is anyone to blame for her illness that would be ourselves!

Above all this we will not apologise for not falling into misery, for not going around crying, for not giving into wanting others to pity us or our child. We are not saints, and I don’t believe in saints, we are trying to do our best every day in the only way we know.

And mostly I want to thank those who have been a tremendous support in the past year, both to our family and to The CATS Foundation that is so important to us. To those who listen without judging, who offer with no strings attached, who are simply there as we need them to be.

And to Emily Rapp for being honest every step of the way, in a journey that is so hard and heartbreaking, for being brave and positive, and showing those who can really see that life is full of beauty, that our children with all their limitations and short life are indeed amazing in ways that only the right people can understand!

 

 

 

 

 

Just a little human touch!

 

Luca Atzori

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:

Brigid.jones@birmingham.gov.uk

You can see the entire story at Luca Loves Life Appeal page on facebook.

This is really important, please help!

 

Just walk on by

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?

 

The good in rare!

Daniel and Amelie

 

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…

Our own little Superhuman

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!

 

We chose happiness instead!

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!

 

‘What I would tell you’ by Julie Keon

Deborah posted this link on her facebook page a few days ago and when I read it I knew way too well why she did it… – What I Would Tell You.

I was transported to that awful week when our world collapsed, the place became real here in my living room, I could even smell the hospital that prides itself of not smelling like a hospital – I was the woman looking at Julie while she comforted her daughter – I was again the mother that came outside and thought that I would rather have been told that the world was ending for everyone.

Julie describes the turning point in our lives, as parents, as a couple, as human beings as it actually happened. It was the moment when we realised that life as we knew it was already behind us. And even if it all changed, even if a miracle happened and suddenly our children were no longer ill or had severe disabilities – parents like us, the Alfords, Julie and her husband and many others, would never be able to go back to that same previous reality – we learn to live, to feel, to love and to survive all over again.

There was another article on Julie’s blog that caught my attention ‘To Say or Not To Say” - here again I know that I have found another mother in a very similar boat to mine. Although it has only been a few months since our daughter has been diagnosed we too have heard all those lines. And we too have politely smiled and used our new found knowledge and dismissed them as yet another ‘one of those comments’. In reality most of the time I would just like to turn to the person and say – ‘Oh, so that would be a satisfactory explanation if it happened to you, would it?’.

But I don’t… not out of politeness but out of understanding that actually this person will never ever see the world the way I see it now – and I would give anything to never have had to enter this world if it meant that my daughter was healthy but I must say that this knowledge and perspective is one of the few positives of the situation.

I too have learnt more in the past 7 months that I had in my entire life. I have learnt not to take anything for granted, to appreciate the day-to-day, I am truly grateful for all the good things that we have even the tiniest details. I pay attention to what is important and easily discard what is petty and unimportant. I look around me and others and see everything a lot clearer and I wish I had always been able to see the world this way but I guess this is what my daughter is teaching me.

When you have a child that is different from others it is complicated, it’s hard to grasp, it’s hard work, it’s like living in another planet, particularly when you are in planet ‘normal’. We find ourselves debating about being sensitive or oversensitive with comments and attitudes that people have and we always discard them as ‘another one of those comments’.  But sometimes we do just want to believe that we have this right! It’s as simple as the ‘fat’ and ‘slim’ comment – no one would ever turn to a fat person and say ‘you are fat’ (that is just rude!) but it’s ok to turn to a slim person and say ‘you are so skinny’ – well it’s not, it’s just as rude as it is a judgement on their weight! Same happens with children I would not turn to someone and say ‘your child is ugly, are you trying for another one?’ and if we think clearly being ugly is a lot less serious than having a serious condition, so why make the comment?

But this too is part of our new reality, to be the bigger person, to be kind, to be understanding, to dismiss those that ‘see’ less than we do.

There is no recipe for happiness but some clearly have easier ingredients than others… we have to be more creative, we have to work harder, we have to be more resilient and we do it everyday.

Our love for our children is just as unconditional and everlasting as any other parent feels for their child and yet I have yet to find a parent of a child with special needs who complains about their child… our planet is different, and despite all its hardships it’s a place where we feel privileged to have our children every single second of their lives!

 

 

 

 

Looking back – #My7Links

Travel website TripBase.com is currently running a web series where people are asked to dig out old posts, in answer to seven fixed questions. Steve who is one of the patrons for The CATS Foundation was kind enough to nominate us through his own blog You’re Not from Around Here, Are You. Take a read of it as it’s a very funny and honest view of travelling and living abroad!

So, we have done a mix of posts from Today Was Not About Tay-Sachs and The CATS Foundation charity site:

Your most beautiful post

Amélie all ready to go!

The beauty of this post is from the message within it. Our trip to Eurodisney showed that in light of the news we had given about Amelie we were still able to have fun as a family. To us that is the most important thing – that we don’t moped around all day but rather enjoy everyday we have as a family. Also, the beauty is in Amelie – she looks stunning in every photo!

 

 

 

 

Your most popular post

How Tay-Sachs is inherited

Our post “What is Tay-Sachs?” on The CATS Foundation is one of our most popular posts as it really provides an overview of the disease that many people can understand. There is a mix of medical terms and language which non-scientific people can understand which is why a lot of people have been accessing it. When we posted it, our aim was to make things as simple as possible so that when people are confronted with the disease they can fully understand it.

 

 

Your most controversial post

How people can help

There were mixed reviews about this post “12 ways to help someone you care about what a child with a serious illness” – some saw it as letting people know how you feel while others thought it showed anger. I guess that is why it was controversial as everyone understood the message in a different way. It was important for people who are not in our position to not understand what we are going through, but rather for people to see how they can help. Off the back of this post we found that our friends and family rallied round us and really helped us move forward with things.

 

Your most helpful post

Stay strong as a family

The “Just Diagnosed” post on The CATS Foundation is our most helpful post as it is aimed at those families in the same position as us. We wanted people to know that they are not along and that there are other people they can contact who can share their stories and support one another. This post has had numerous hits and many other families have been in contact with us – this shows that the message it contains is working!

 

 

 

A post whose success surprised you

Izzy and James

When we opened up Today Was Not About Tay-Sachs to other families to contribute to the blog we didn’t realise how successful it would be! This post outling the story of Isabella showed not only that there are other families in our position, but through the comments they also had an amazing network of friends and families who are there for them.

 

 

 

 

A post you feel didn’t get the attention it deserved

Training for a treat

Training for a treat

This post deserves more attention for the simple reason it shows how much Amélie has to go through in one typical morning of every day. While most children her age are out running around Amélie spends her time with her dad exercising to make her body strong. We feel it shows her strength of character – she never complains and always completes the the exercises she has to do. Amélie is a very special girl and everyone should read this post to see how well she is coping.

 

 

The post that you are most proud of

Patricia and Amelie

Finding out that your child has a terminal illness knocks your world from its axis – it is one of the hardest things to be told by a doctor and to come to terms with. I can not put in words how proud of Patricia I was when she posted “Our Story” as it was a big step in accepting what our future was going to become. T open herself up to the world and let people in on what we went through as a family is one of the bravest things she has ever done – this is why I am so proud of this post as well as being proud of Patricia. She is a very special person and also an amazing mum to Amélie!

Nominations

Here are the blogs we’ve nominated in order to keep the #My7Links project going – we hope you enjoy reading them and staying in touch!

  • Our Little Seal – A touching blog about Ronan who has Tay-Sachs and how his family are coping with the disease.
  • Road King UK – a fun blog about one mans experiences on his motorbike!
  • Dan Martin Extreme Athlete – this man does not stopping pushing his body to the limit – his next challenge is an around the world Triathlon (including swimming the Atlantic)!
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    Here are the #My7Links rules to follow and we look forward to reading the posts!