Ok, so quite a profound question. But how often do we truly think about it? Well, in the last 4 years we have thought about it quite a lot.
Firstly there is the “quality of life” question. We have thought a lot about this, because various medical professionals use it as the basis for making a decision, or suggesting a course of action. Not nowadays, but in the early days, there was definitely a thought that Isabel may not have a good “quality of life”. In the early admissions who can blame a doctor for thinking this, seeing this floppy, poorly child, certainly not seeing the “normal” Isabel in her home situation.
But how do you judge the quality of a life? You might see someone in the street looking miserable, or crying. But it could be that they have just won the lottery and are torn about how to share their winnings. You may hear someone screaming in agony… shortly before they hold their new baby for the first time in a moment of profound joy. So, in that snapshot how do you make a judgment about quality of life that can be deemed anything like accurate? Yet, somehow it is OK for a doctor to see a patient and have that view (even if they don’t share it) without seeing the context of their life. Even if you do know the entirety of someone’s life, its easy to make judgments based on what you think they are missing, especially if thats something that’s really important to you, whether a material possession, an aspect of their health or relationships. We might think “oh, if I couldn’t talk or walk my life would be miserable”, but that’s putting our own take on it, from where we are now.
Isabel doesn’t think like that. She lives in the moment, and enjoys that moment. She knows joy, love and supreme happiness. She has the most beautific smile that illuminates the room. She recognises the important people in her life, and communicates pretty well without ever saying a word. Now that is a real talent.
Before we had Isabel I always felt a strong sense of purpose, that my life had to be of value. But I defined that value about what I did, how I helped people through education, and the values I held. It was all about doing. When I thought about other people’s purpose it was about doing too, whether advancing lives through pioneering research, or generating prosperity, or helping others to overcome their barriers. Now I can see how much Isabel achieves in just being. If that sounds odd, let me sum up some of her achievements:
1. She has been an inspiration to others to keep going, and to stay strong in their own health battles.
2. She has shown that you don’t need to be the biggest, the fastest or the most academic in order to be completely loved. A great lesson for her 8 year old brother and his friends too.
3. She lives in the moment, and has taught us how to live in the moment too. Having such an uncertain future puts the focus on now, this second. If today is good then today is good – lets not value its goodness only in comparison to yesterday or tomorrow.
4. She has pure and uncomplicated love for the important people in her life, particularly her immediate family and close friends.
5. She helps us all to see the miracle in life and in our lives.
Some of these achievements are aspirations for the greatest world philosophers, so don’t tell me my daughter’s life doesn’t have meaning or purpose. And please don’t assume she has a poor quality of life – she probably smiles a lot more each day than most people do in a week.