I heard a little rustling as I came out of the shower this morning and I went out and there she was sitting on the stairs.
"Hi baby!" "I'm not a baby!" "Happy Birthday!" And then I got that smile. If she was a Hollywood star it would be referred to as a megawatt smile. And it's as if she knows. We made it. She's five. And this year, for the first time, the first thought that occurs on her birthday is not the shock that we got on her original birthday. She has transcended that. We have all transcended it.
Her sister got up and gave her a cup with 5 on it and a stethoscope. Mary loves a stethoscope. She loves acting the doctor. If you didn't know better you would imagine she might be a doctor some day. But of course she won't. Barring something radical, she will be one of life's patients. But then, so am I. And so are most of us. And she will be so much more than a patient. She will be so much more than a client. She will be so much more than a service-user. She will not be defined by Down syndrome. It permeates every cell in her body but so does her quintessential Maryness. And that overrides everything else.
The day after tomorrow, she starts school. I never thought I would be celebrating another one of my children being lost to the educational system, which I don't have huge faith in, but tomorrow will represent another little victory for the three most stubborn and determined women I know - my daughter and her sister and their mother. I also take some comfort from the fact that the school she is going to seems like a wonderful place, somewhere with a great sense of community, where they are as focussed on producing kids who are nice and decent as they are on the three Rs.
But mainly, somehow, my thoughts are not for Mary but for her sister, who is already in the school. We all agree it is nice for kids to have an older sibling in a school already, and my two girls are incredibly close. But I do not want Anna to ever become Mary's keeper, or carer. I do not want her, at seven, to feel responsible for her sister. Because that's the kind of thing that can easily happen accidentally, if you have a little sister who needs extra help. And now there will be no escape for Anna. School was her domain. Now, when she is there, she will always be, partially at least, Mary's sister. And she will notice every second glance.
I have no doubt that Mary's Down syndrome has helped to make Anna the great little person I think she is. She has huge empathy and a powerful sense of justice. Amal Clooney Junior, we sometimes call her. Maybe she was just born that way. Maybe the way we are is largely hardwired into us, like Down syndrome. But I think Mary has definitely encouraged these qualities in Anna. Anna is not only colour-blind when it comes to people who need extra help, she probably positively discriminates towards them. And not in any pious way. Just unconsciously. She has a radar for the extra-help community. And sometimes you will sense her looking at someone for slightly too long. And once she has ascertained that that girl or boy does indeed need extra help, her comment will generally be along the lines of how cute that person is. That is how she sees it. If only it was all about cuteness forever.
I still remember her tears when she heard one of her school friends wasn't coming back to school because she was now going to go to a different school, a so-called special school. I was, I have to admit, kind of surprised. I guess that maybe I had assumed Anna was doing her duty with this girl, that it was in some little way, charity work that she was pals with this kid. I kind of assumed she was doing it for Mary, that this was part of Anna's work as an international human rights lawyer and a champion of the diversity. And then I suddenly realised it wasn't that at all. She wasn't crying for her little friend. She was crying for herself because she would miss her.
But then, kids can tend to be colour-blind. That's why school is scary. Creche, a place of such love and joy that meant so much to our family over the last seven years, is over now. And we say goodbye to a place where we knew Mary was safe and was loved and was generally just one of the other kids. And now you worry that the process of marginalisation begins. I worry it will be a combination of the kids and the adults. Institutionally, Mary's difference will now become much more obvious. She will be the one with the SNA, the one who needs extra help educationally, the one who will go out for extra classes. And because of that the other kids will start to ask questions. And they will begin to understand that she is different, and not just in the way that we are all different to each other.
This is what you worry about. That this is the beginning of the parting of ways, the deviation from the norm, that this is when she starts being left behind. She has a little friend from creche who is also going to school with her, and the two of them are very excited that they will be sitting next to each other. And I find myself thinking, but for how long? How long will he be her little pal, her little champion? Will his colour-blindness dissipate with age and experience? Will the scales fall from his eyes as he realises that there are 28 other kids in the class who are more like him? Or is that my own prejudice? And if I of all people can't see why someone would want to be friends with Mary, then what hope is there?
They tell you never to look forward. And in general I don't. You could project out, all the way to when you die. And you could despair. You could despair every time you read about abusive staff in care homes. You could even despair every time you see someone getting married or getting a job, or graduating, or growing up and leaving home. You could despair every time someone has a perfect baby. You could get bitter too. You could get bitter about the fact that nobody understands really. You could get bitter with people every time they moan about minor problems with their kids. You could get bitter even when they tell you how great Mary is, and how lucky we are. They are only trying to say the right thing, to tell you that everything is OK, and that she is a great little person. They are trying to act colour-blind about it. But sometimes you want them to acknowledge it. You want them to say, that must be shit, that is shit. Poor Mary. Poor you. When they tell you how great it all is, you could feel like telling them they know sweet FA. But what would be the point of that? You would be doing everyone a disservice.
The best idea in general is probably to ignore the DS as much as you can. But that doesn't make it go away. And you are reminded of it all the time. You are reminded of it particularly every time there is any kind of interaction with officialdom. Officialdom does not see Mary as a just another person. To officialdom, she is a client, a service-user, a person whose condition must always be measured. Officialdom asks her to perform like a monkey, to show them how 'good' or 'bad' she is. And while I can ignore it for lots of the day, Sarah rarely has this luxury. Because she is the one who has to bring Mary to all these appointments and places where it is all about DS, and where there is relentless focus on what Mary can't do.
For her birthday, Mary is going to a place called The Down Syndrome Centre for the first time, to start to pay for speech therapy, because, like so many kids like her, Mary has been chucked out of the services now because she is mild, so apparently she is grand and has no need of speech therapy or anything like that anymore. She is, as the professionals say, 'doing great'. They say that with an encouraging smile, and I often feel they are subliminally telling us that we should be ashamed if we ever feel sorry for Mary or feel she should get more. Because she is doing great, in case we didn't know. And it could be so much worse. And of course it could.
In a way it is almost a relief that Mary will now have to pay for her services. We are lucky; we can afford it. And at least now it is an honest transaction where Mary is paying for a service, rather than being around with the begging bowl fighting for an hour or two of attention. The Down Syndrome Centre raises funds, but it also charges. It is a part of a growing sector for frustrated parents, a parallel system where kids hopefully get what they need with a bit of dignity. But still, down to the name of the place and its very raison d'etre, it will be shoved in everyone's face a bit more out there that Mary has Down syndrome.
Anna understands. She knows that Mary has a thing called Down syndrome and that she needs extra help. The sad thing, or maybe the happy thing, is that Mary does not know this. She is blissful in her ignorance, her false paradise. The frustrations are little ones right now. But you could think about it, as she heads into school, and you are forced again to confront her limitations. You could think about how the frustrations will grow, as she realises things. You could think about the day you will have to sit her down and tell her everything. Imagine if you were her, getting that news. And initially, she won't fully grasp, as Anna doesn't, the sheer bad luck of it all. She will probably ask questions, as Anna does now and then, about how and why it happened. And what do you tell her? What the hell do you say to someone?
But all of that is pointless. And let's not be negative. I just wanted to explain to you that it is not all easy for Mary. I should tell you that it is all wonderful and we are all full of joy. And we are, mainly. Every day, I have many more pressing worries and concerns than Mary and her glitch. But I want to tell you for everyone you know who is in this boat, on behalf of all of us who are in this boat, not to believe the hype. People talk a lot of crap about having a child who is 'special'. She was not sent from heaven. And she is not an angel. Boy, is she not an angel. She can be difficult. She can be stubborn. It can be hard to negotiate with her. She has little concept of consequences later for actions now. You can't even really punish her afterwards for something that happened earlier because she will have forgotten why she is being punished. That causal link is not there yet. Because she lives in the moment. And how can you blame her at four o'clock for something she did at three o'clock? That was a different country as far as she is concerned. And that can seem unfair to Amal Clooney Junior at times.
And on one hand we ignore her difference most of the time, but unconsciously it is always there. We make allowances all the time. We tailor our lives all the time. Right now, for example, it can be difficult to go to places where there will be too much stimulation or noise. Because it freaks her out, and she wants to go home. And it's not fair on Anna, and it's not fair on anyone. But that's how it is.
But she is happy. And that makes us happy. And we bask in her predominant joy. And that is all that matters. It's not about us. It's not really about anyone but her. And she has a great capacity to be happy and that is all that matters in life really. She will not be a doctor, and hopefully that won't frustrate her too much. But becoming a doctor is someone else's idea of a successful life. It was never mine anyway, and it is less so now. My idea of a successful life, informed more and more by my kids, is to be happy and to live for now, and to make the most of it. Life is not about progress, about advancing and accumulating until you die sitting on a hill of accomplishments and achievements, a big old hill of beans that means nothing to you or anyone in the end and that dies with you. Life is happening here and now. And if everyone is going to go around wearing their misfortunes on their shoulders, then we all might as well lie down and die now.
It is apparently tradition that I write these pieces on her birthday. But this year didn't feel right. She is getting too old for this. And so is Anna. Anna asked me recently if I had written a piece in the paper about Mary. And she wondered why I didn't write one about her. Just like she wonders sometimes why people lavish attention on Mary. She wonders if Mary is cuter than her. So maybe one day soon she will read these. And if so I want to say to her that this one is for her. And I want to say to her too that everything is all about her and Mary, that they are both the best thing that ever happened me and they are the meaning of my life and despite it all I think I can honestly say I wouldn't change anything about either of them. And Mary is not Anna's burden to bear. Mary is no one's burden to bear. And maybe, just slightly, Mary is a gift, and she brings great joy wherever she goes. But no more than her sister.
And to Mary, happy birthday, baby. I am so proud of you.
And you're right. You're not a baby anymore.