I went for coffee recently with a couple of Mums whose children are also disabled. As we were chatting, our conversation turned to the recent spate of documentaries on television about disabled children and their families. We talked about how the experiences that were shown were all horribly familiar. In fact, I have stopped watching such documentaries because frankly I don’t learn anything new from them. However, we got talking about a common theme in them: namely, the bravery of the families concerned. We all looked at each other a little bewildered because none of us felt remotely brave or courageous.
A quick summary of the Guardian reviews of these documentaries illustrates my point:
“The focus here is on the unimaginable bravery of the families” – Baby Hospital, ITV 1, 13 June
“To see the bravery of both the children and the families… is inspiring” – Born to be Different, Channel 4, 23 June
To look at it from the outside there may appear to be much about our families that is brave. We live with a constant fear about the health and well being of our children that is profoundly different the commonplace worries for able bodied children. Sometimes, we literally do not know whether our children will survive to see another birthday or Christmas. There are frequent hospitalisations for operations and illness. We have to witness our children undergo difficult and painful procedures every day. Whether it is the frequent invasive operations, the daily physiotherapy routines or having to wear painful leg splints, we put our children through the most grueling of tortures in the hope that in the long run we will see them prosper.
There are daily challenges to life that most families don’t have to endure. We have a constant stream of medical appointments and therapy sessions that make a normal 9 to 5 job virtually impossible; endless battles with doctors and consultants to explain to them why the medical procedure they are recommending may not be appropriate for our children; the maze of red tape, form filling and bureaucracy that comes with being involved in the social care system; the regular sleepless nights because a child is unwell. It all adds up to a difficult experience.
Despite all of this, none of us could relate to the word “brave”.
The fact of the matter is we don’t have a choice. We have to do all of these things simply because if we don’t them, who will? We have no alternative because the consequences of not doing them are truly unthinkable. Giving up on our children is not an option. To be brave, I think you have to make brave choices. We are simply doing what is necessary.
The wonderful thing about being a parent is the unconditional love you have for your children. Our children are our responsibility and as parents we are compelled to try and do the best for them. That can be as prosaic as trying to help them with their maths homework or as distressing as sleeping in a camp bed beside their hospital cot as they wait for brain surgery.
The mistake that the documentary makers and reviewers are making is to confuse bravery with love. The only truly brave decision we make as parents is to love our children. After that there is no turning back and we are just along for the ride wherever it takes us.