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!






One Comment

  1. Reply
    Beatriz Fernández January 28, 2013

    Beautiful post!

    And let me add if I may…. why Emily Rapp writes her book about her son, why you started CATS foundation?? Maybe because those acts of love, and hard work, give more meaning and trascendence to the lives of your children. Is it necesary for them to grow up, go to the university, reach success for a parent to be proud of his child?

    There are many ways to have a plenty life in spite of this could be short and painful. My dauhghter taught me this since she is ill, even before knowing her diagnosis was tay-sachs and that it has no cure: that her life can be so trascendent enough to change my life, to make me understand so many things, to be open to understand so many more in the future. I’m not meaning that “she changed my life” in the common sense of becoming a mother… But understanding the life in a different way when you became a “dragon mother”, as Emily Rapp would say.

    My daughter has change my life and my husband’s life in a very particular way. She is making us better persons, she is teaching us how hard things can be and how strong we must be to be with her step by step, to continue enjoying life…

    But we are still in the path of trying to keep hope on our side and not fall apart. It is a hard and difficult way that I am sure will be full of terrible moments. And for me, knowing that there are other parents like Emily Rapp and Patricia and Daniel Levi, who raise awareness about this disease and can give advice and strenght to other parents, each one on its style, is a great relief.

    So to that “gentlement” who asked to Emily Rapp about her feelings about making money from her book, I would asked him to ask the same question to the public like me, that will be a reader of it: you can not imagine how much money I can save on psychologists, alcohol, tissues, antidepressant pills for every wise word written on it.

    Thanks to all the dragon parents who without knowing, teach to us, newly diagnosed parents about how to carry on….


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