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!