Wednesday 17 July 2019

A prayer for my daughter

When Brendan O'Connor and Sarah Caden's daughter was born two weeks ago with Down Syndrome she broke their hearts, but every day, she mends them a little bit more

Brendan O'Connor
Brendan O'Connor

IT FEELS disloyal and unfair to Mary now, two weeks on, to look back on her birth, and how it was like a scary film. But that is where it started. That is where Mary's story started and where our story took a fairly unexpected turn. Thursday two weeks ago, we went into Holles Street in the morning, tentative but full of hope; and by two o'clock, our hearts were broken and our lives were turned upside down.

It still upsets me a lot to think about that half-hour, but images from it are burned on my brain -- only for now, hopefully. Sometimes, depending on what kind of a day I am having, it still makes me cry. At the moment, we cry a little bit more than we used to in our house. It can be anything from just looking at Anna, the toddler, to a kind word, to seeing someone with their baby -- lots of everyday things.

When Mary came out, the anaesthetist actually said to one of the doctors to hold on to her because she was jumping around so much. Sarah, lying cut open on the table, said, so she's not floppy. It seemed she wasn't. And she was a girl.

Thank God, a girl. The irony is I had practised convincing myself it was going to be a boy, so that the first time he saw his dad I wouldn't look too disappointed. All those things make you feel foolish now, the cocky hopes and dreams of before. Sometimes, it can even make us cry just to be reminded about life before Mary, a different life indeed, when we were innocent and foolish and thought we knew what worries and troubles were.

I remember saying to the anaesthetist when Mary came out that we wanted a girl, and she said something like, well I'm sure you just wanted a healthy baby. And now we had one. They seemed to look at her for a bit too long when they took her away over to the table. She cried sporadically, which I thought I remembered was a good thing. Then they weighed her -- seven eight, a good weight compared to what they were expecting. And they showed her to us and I got an inkling, for some reason, that something was wrong.

Then they brought her back over to their observation table and they seemed to be looking worried. There were lots of them around her. I remember grasping on to the fact that one tall blonde doctor was looking down at her smiling and I thought, okay, she's okay.

But now I recognise that smile for what it was, a sad little smile, "the poor pet". Then there were phone calls and we kept asking is something wrong. Her oxygen levels had been a bit low, I think they said. They needed to check. And then the doctor came and told us that her ears were set low, which was indicative of certain chromosomal disorders. God bless my innocence, I didn't know what that meant, or what he meant when he said -- what I now know -- were the words Trisomy 21.

Eventually he said it. Down Syndrome. I tried to console Sarah, who was still being operated on. Whatever is wrong with her, she is our little girl, and we will love her and it will be fine.

But I didn't believe it myself. We still weren't 100 per cent positive at this point, but I think in reality I knew. I wasn't sure if Sarah knew. I came out while they stitched Sarah up. It was dawning more and more but I still couldn't believe it. It was genuinely like a nightmare, but it was real. And you have all the classic responses like not believing that this is meant to happen to you.

People ask now how we found out, did we not have tests done and so on (some people say the most appalling things to you. But you know, people don't know what to say. I wouldn't either.) How we found out wasn't ideal, but what were the alternatives? Would we have preferred to hang around for a few hours in a fools' paradise and then find out? Would we have preferred to have found out months before and come to terms with it during the pregnancy? There is no good way to find out. But they handled it as best anyone can handle it. And at least when we did find out we had the consolation of Mary being there, the consolation of having a baby whom we loved. If you found out in the abstract, you have months to worry about it, without the consolation of Mary being there and us knowing we love her. We were also in the right place.

I have learnt many things in the last few weeks. One thing is that kind words can be so important and such a consolation. I never gave much of a damn for kind words before. Dr Robson, Sarah's consultant, came in to see how we were as I stood in the recovery room by Sarah's bed. "Mary is Mary," he said. I'm sure that Dr Robson won't mind me saying that he is not the most gushing person. Part of the reason I liked him so much is that he was fairly straight and fairly male and didn't ever emote too much. He was nice and he was straight. But with those three words he came through for us in the most unexpected way. For some reason it soothed us as we stood there dazed, and in a waking nightmare.

Kind words from all sorts of doctors, nurses, friends and some unexpected sources would help get us through the next few days. When Michele at our elder child's creche heard the news, she sent the most beautiful text about how they looked forward to welcoming Mary there. For Sarah, it meant a lot that these people, who have embraced Anna so much, were also going to embrace Mary. That text saved me for one of those dazed days. I sent it on to my mother and I think it got her through a day, too.

Normally, after a C-section, they would give the father the baby to take away while the mother recovered. But instead they left me with Sarah and minded Mary up in the unit. I went up to see her, and it actually made everything much better. Once Sarah was out of recovery, Mary was brought down to her and straightaway they bonded, in a way that I don't think either of us did initially with Anna. I don't buy that instant love thing with a baby. But actually something magical kicked in within Sarah once she got her hands on Mary.

The next few days were a bit of a fog. You're in shock, they tell you. And you're grieving for the baby you didn't have. I didn't quite buy that. I was grieving for my life before, and for my dreams maybe. But we had a baby and she was very cute, and I also had a toddler to manage who didn't deserve any of this no more than I did, or Sarah did, or Mary did. So gradually, you tell people. You tell them Sarah had a beautiful baby girl and then you say, she has Down Syndrome.

First Lessons of Mary: Some people have a knack for saying the perfect thing, for being perfect to be around, for knowing just how to be, for knowing when to talk and when not to and when to pretend it doesn't exist for a few minutes. Those are the people you need.

Other people don't know what to say but will tell you that they don't know what to say -- and that you can work with, because you can just tell them where you are at.

And some people say awful or really stupid things that you will find it hard to forgive. But Sarah says we must forgive them because it's just that they don't know what to say, so they blurt out something really stupid and insensitive.

Other people handwring and sympathise and keep saying, is there anything I can do, but you know they don't mean it. And some people are positively ghoulish -- grief junkies.

And then there are those people who, God love them, try to be nice and positive. But you see, we are gone beyond politeness these days. Lots of people, we just tell to eff off in various ways. We have agreed there are two words we need to use a lot now, if not always directly. Eff and off. One poor girl, who was very good in helping us with a particular problem, said to Sarah that one day Mary could be getting the bus home from school on her own. Sarah said to her she was thinking more that Mary would get the bus home from the Electric Picnic on her own.

After we had our first child, I thought I saw the world very clearly for a while -- I saw clearly who my friends were and who I valued. After Mary, I thought I could almost see the difference between good and evil. And some people you just didn't want near you and some people you knew were good.

Second Lesson of Mary: I have an amazing family and some wonderful friends. I never really knew it so much before, because I wouldn't be one for needing people.

But sometimes you have to let people support you. One friend, who had problems of her own, practically singlehandedly got me through those first few days, and I will never forget her.

She bossed me around, jollied me and Anna along for the weekend, made sure we ate, drank with me, did all the internet searching and drip-fed me what I needed to know, laughed with me, let me cry a small bit, and generally kept an eye on everyone.

Others kept in touch, gently and normally, leaving us our space to come to terms with it but just being there. Another friend saved our lives by coming in each evening for the first few days that the girls were home from hospital, and just sitting there, holding Mary.

I now know what to do if anyone I know ever has a trauma. Just be there. And maybe give them some food.

My brother, whom I fight with the most, was there on the phone from San Francisco, but there, and we probably talked in ways we never have. And then sometimes we just talked about music. My mother, my dad, Sarah's parents, everyone. Some people just do things like chit chat or gossip to you about trivial things, some people let you express the pain. And some people just give you food.

So now I know that people are amazing. And I have more of an idea what love and friendship and family and kindness are. Some days, in my more elated moments, I would think that having spent 40 years looking for the meaning of life, sometimes in the most self-destructive ways, Mary had taught it to me in a few days.

Sometimes I nearly pitied, or at least felt superior, to the people who didn't know what I knew, who this hadn't happened to. I don't know that I can put it in words yet but I think the meaning of life may be about now, and love, and not giving a damn about things that don't really matter.

Sometimes, I feel spectacularly liberated. A colleague sent me an email when I told him the news and his comment was that at least it's not bullshit, like most other

things in this world. And he's right. Real life has begun. I have woken up. It's not all easy but it is real. None of this is to say that I buy the notion that Mary is a little angel sent from God to teach us things. I don't really think there is any meaning to this, or any divine plan. Mary's little issue is a glitch, a random hiccup of nature. But then, she is teaching us things.

And then, there are times when I think my whole life has been shattered into pieces -- all our plans and our ideas of how the second half of our life was going to be. A friend of my wife's told her that a mother of a child with DS said that the one piece of advice she would give us was to remember always that Mary is our baby, one half of each of us, and not a member of some tribe of Down's people, a membership that sets her apart from us. That was a very helpful insight. And Mary reminds us all the time that she is one of us. Like her sister when she was a baby, she is one of the bird people, chirruping and quacking. I thought all babies do this. I'm told they don't. I also fancy that Mary looks like me (no smart comments). Anna looked like me, too, as a baby and she has turned out okay. But I won't ignore that Mary will be a little bit other. But then, we are all a little bit odd in my little family so she'll be okay. And hopefully we will celebrate her otherness and the exotic looks that will no doubt develop. Everyone says she is a pretty little thing. I certainly think so. But I'm her Dad. The first time I called her Cat's Eyes I'm not sure Sarah knew what to think. But she does have cat's eyes. And let's not pretend she doesn't.

Mary is Mary, and part of that is the little signs of her extra chromosome. So I need to make them part of who she is to me. Her cat's eyes are not a symptom of her tribe, but part of Mary.

Everyone tells you to try not to think too far into the future. You don't do it with your other kids, apparently. So we try not to. But we have made a few decisions. My wife does not want anyone's sympathy and she is not going to become a campaigner. For me, I am determined that Mary will have a great haircut and great clothes and she may even go to one of those posh schools I profess to hate if it's what works best for her.

Some people tell us we are remarkable how we are dealing with this. We're not. But what else are you going to do? I always wondered how people cope with this kind of shock. But you have to, so you do. And we will do more than cope. I am determined our lives or Mary's will not be defined by this. I am not going to become the parent of a handicapped child and my wife the martyr mother of a special little angel. People keep telling us, too, that we will make great friends with other people in the same boat as us. But while there are certain people I look forward to talking to, friends of friends and acquaintances who have kids like Mary, I don't hugely see myself basing my social life around other parents of kids like Mary. I'm not really a joiner and as life goes on, like most men, I'm becoming less social. I also imagine we're not the type. I'm sure I'll be eating my words on that one soon enough.

Other people say those awful things like God wouldn't have given us Mary if we weren't great people who deserved it and could handle it. We don't deserve it and we're actually not the right kind of people to handle something like this. I am not patient or good, or steady, or any of those things. My wife is more so but still, she's fairly superficial when it comes down to it. I tease her that I am going to become a saintly type now, a good and wise person, and that I will get really into the religion. Funnily enough, whatever faith I had in anything is gone for now. But we'll see.

People tell us now that Mary will bring a lot of joy. Everyone with a kid with DS will tell you this. I don't think they are all lying but it can be hard to see at the beginning. But then, each day I can see it more. It helps that Mary is very good and that my wife is a Nazi for routine and it is kicking in already.

It helps, too, that Mary's health is largely fairly good so far and she doesn't have any of the major problems that can be associated with her tribe. We've been in and out a bit to Crumlin and Temple Street and let me tell you, it would put manners on you. There are people with far worse things to cope with than we have. Nevertheless you find yourself saying variations on something someone summed up for me in a line by Philip Larkin: Your life is the harder course, I can see. On the other hand, mine is happening to me.

Dr Murphy, the paediatrician, another angel disguised as a straight-talking Corkman, told us before we brought Mary home that now that we had ticked the boxes on many of the health problems, we were essentially dealing with a child with an educational difficulty. Minimise it, he said. You mean in our heads? I asked. Yes, just minimise it. And he was right. And again, those words meant so much to us, that small bit of advice. You see, a sick child brings with it a whole other series of challenges to a family. Mary is not sick, for now anyway. Hopefully, this will mean her development isn't further hampered; and she should also, Murphy told us, fit very well into the family. For now, it's like having an "ordinary", very good baby -- a bit of a pain in the ass sometimes in the middle of the night, but all worth it. And her sister is bonkers about her.

We think we are over the immediate shock and upset. But we worry that we are kidding ourselves. I wonder some days if I am in denial. And there are good days and bad days, but the general trajectory is up. Having a new baby is fairly traumatic anyway, and much of our stuff right now is probably down to the mundane things like sleep and the fact that we now have two, one of them who never goes away even for a second.

We are sad sometimes and I have no doubt there will be more sad days into the future. But I thought that joy had died for us that Thursday lunchtime, and it turns out it hadn't. You will hear real laughter and see real smiles in our house again now. And when I take off my shirt in the evening and lie on the couch and lie Mary on me like I used to do with her sister, all is well. Could I say yet I wouldn't swap her for anything? No. I maybe would swap her for Mary without Down Syndrome, but that's just my prejudice from before and I'll get over it fairly fast I think. But do I wish she had never been born? Do I wish that we had just been happy with one? Do I wish we could have our old life -- which I have idealised out of all proportion -- back? Not any more. She's here now, a part of our little family. And we'd be lost without her. She has burrowed her way into our hearts so there is no imagining the world any other way. And even if she broke our hearts a bit when she came first, she's fixing them up a bit every day. And I can't wait for the day I teach her the two most important words she is going to need in this life for whenever we or Anna aren't around to say it for her. Eff off.

It would be foolish to think that things are normal in the way they were normal before. But you know, I think we are happy. Some days now I can even look to the future. I wonder, as I did with Anna, who Mary will be. Each day she opens her eyes a bit more, a little more alert, and I feel I know her more and she is unveiling her little self to me and I think I like her. She has great muscle tone, is 10 times the feeder her sister was, prefers when she is in control of the bottle, likes music and I suspect she's going to be a laugh. In short, I think she's an O'Connor. I had a feeling before she was born that this one would be a writer, and not just a scribbler like her dad; a real writer, more like her mother. I still think it. And while it begins with a slight surprise, I think she'll have a great story to tell.

In the meantime, I hope I can teach her a lesson, too. I think I've learnt one really important thing in the past two weeks. I've got my cross to bear now, so I won't be looking for any more, anywhere else. Everything else now has to be about joy. My family is going to have the joy imperative, and that means we might have to travel the world and go to lots of amazing places and eat lots of food and drink lots of wine, but that's the joy imperative for you.

The funny thing is, you know very quickly when something happens whether everything is going to be okay. And even in my shock and agony in that operating theatre, I think I suddenly knew everything was going to be okay. And it is. There might be sadness ahead and there might be challenges ahead. But everything is going to be okay. Everything is going to be okay. Better than okay.

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