John McDermot

Baby No. 2!

Blathnaid Ni Chofaigh talks to Liz McDermott, a mohter who found out that she was expecting a baby with no limbs and possible brain damage.

When you find out you're expecting a baby, it's the greatest news ever and your heart misses a beat, however, for Liz McDermott it was the total opposite. In the midst of exciting news, she felt devastation. Her baby was going to come into the world with no limbs. “This was a life changing moment, how do I deal with this”?  To some women going to England for an abortion was an option but Liz's strength in her faith gave her one choice."What seemed to be so bleak and so hopeless and so awful, I think if you let God in, he can somehow turn around for you."

Liz McDermott grew up in a devout Catholic home in Belfast.  "My parents were both very committed to their faith, it was very embedded in them.  You know faith was just a way of life really."

Or did you question your faith, I mean I presume you were like everyone else having a good time as well? 

"Absolutely I mean I would go to Mass every Sunday but I wouldn't necessarily be listening. No, I did not grow up feeling a very strong sense of faith in me, faith was part of my life, it was something I did, it was a habit. But I did certainly find myself conflicted in living a modern life and having relationships and all of that entailed and the fullness of those relationships. I suppose a bit of me was a bit troubled by that."

Liz studied law and started working as a solicitor, and she met her future husband Brian McDermott through work.  They married in 1998 and had their first child, Eve, in 2000.

"I was thrilled you know, to have her. It was a difficult time for me because my dad was dying at that time. Butt was just lovely to have this new life that was just so vibrant and so alive. I gave up work, I was not going to try juggle and I was at home, enjoying the freedom, that entails with just being able to be with Eve."

But isn't that a lovely privilege in this day and age to have a choice?

"Yeah! Absolutely I'm well aware that lots of women don't have choices."

In this world, where was your faith, were you still practicing your faith?

"I was yeah! Brian wasn't there at all, I mean he's not from a sort of background of faith or church going at all. Didn't share that with me, that was something I was doing on my own and in fact, it was something I was struggling with.  I felt I was in danger of going this way and leaving him behind on this”.

But you never resolved that?

"No that was never resolved. And shortly before I became pregnant with John, I can remember being in Mass and feeling a bit low and looking up at the altar and saying 'I feel I'm drifting'. I just had that sense that I am drifting in my faith, I want to get close to God but I'm too comfortable in this life, this nice South Dublin life that I have for myself”.

In 2002 Liz became pregnant again.

“Oh, Happy days! Here we go again number two on the way, my bump is getting bigger. Then I go for a scan (this was about 24 weeks). Brian came in with me and the nurse she's not saying anything which gave us the indication that there could be a problem. As she was scanning around, she said: "I'm seeing the shortened limbs" - that is the phrase that really stuck in my head. I said: 'It might be positional, I can't really see a hand or a foot. But she said 'You're going to have to come in tomorrow for a more detailed scan with a consultant'.  So we left the hospital just in shock, I suppose there was something about tone of voice, the look of concern in her face that told me all was not well."

The following day Liz and Brian returned to the hospital for a more detailed scan with a specialist consultant. 

“I knew it wasn't going to be good, I was just hoping it wasn't going to be too bad. When he finally said 'I'm afraid to say it's very serious abnormality, There basically aren't any limbs developed'.  One goes into shock - you never consider that this was possible. I was looking at the scan and I could see very clearly this little face. It was a boy and I got a bit tearful at that point, I could see he looked a little like Eve. I could just see the little roundy face and his eyes. I just remembered being very focused on his head and face. I suppose that was a good thing because it made him real and human. The doctor then said: 'You know he will never do anything but lie in a bed.' "

How did that make you feel?

“Just gutted, gutted. I thought to myself: 'How do I deal with this?' This was a life changing moment then he said: 'You know, I'm sort of obliged to give you the information that considering the abnormality, if you wanted to go to England, for an abortion, it wouldn't be a problem even at 24 weeks, there wouldn't be any problem about that'.  So I think at that point I immediately said, no that's not going to happen, it's just almost kind of a knee jerk thing, it was my instinctive reaction, that's not for me”.

I suppose, I'm guessing, because of your faith, that you would be anti-abortion?

“Yeah! It really went very deeply, I felt that I didn't have any right to interfere with this baby's life, that's not to say that every other bit of me was wondering 'How the hell was I ever going to cope or manage and I was a puddle of tears'. One of the things when I came out of the first scan, I remember saying to Brian 'You know, if I was 19 and on my own I'd be on that boat.' I understand very well, the trauma, the shock, the grief, the panic that sets in. It's very difficult to judge a girl or a woman who would make a different choice to the one I had. I think God, more than anybody, understands and forgives that kind of decision being made. Which is not to say that I think that it is always the right, or it is ever, the right decision. I still think that society has a role to play, I do believe that we don't own the life that is created in us. 

Where is the anger, because I'm being genuine with you, when so many bad things, when something that awful happens to you, you know the questions

'Why are you doing this God'? Where's that there?  'What I would say to that was that I did remember my praying before I became pregnant with John, that feeling I was drifting and that I was moving away from faith and from God. I have a sense that this is all connected to that, so there was no point in feeling angry about it. I've asked for something and I've got it which is not to say I didn't flip probably at Eve, you know she was the repository for all of that anger she would have witnessed an awful lot of grief, outpouring of grief.  Carrying John then, I had no idea, what he was going to look like, what were you imagining this baby to be?  Brian and I both say that, the scariest time was before he was born because we had nothing to hold or see or develop a relationship with. The other impact is that there is not an awful lot of movement it is all kind of eerily still and people would say to me. 'Oh! Congratulations' - it would be people who didn't know me very well, 'God your bump is very neat.' They didn't know, they didn't realise, yeah! there is a reason for that."

Liz and Brian went to a geneticist who told them severe limb abnormalities indicated a high risk of brain damage.  Brian was distraught by this news. 

"He sort of fell apart in the car park. He became very upset and said 'God how much worse can this get?'.  We could kind of live with the fact, OK if he is fine every other way, he's going to have a character and personality and a brain. Suddenly, if that was taken away, you're looking at a whole other scenario.  I was very conscious that he didn't have anyone to go and dump all of this. He didn't have a kind of statue that he could just go fall in front of and cry and say 'Help me'.  He had to carry this alone and I can remember saying, please come and do something for him, I know he doesn't even believe in you but just do something to help him.'  As soon as I said that, I heard these words in my head, 'I'm not going to tell you what I'm going to do but I don't want you to worry because I'm going to take care of all of you.' I instantly felt we're going to get through, somebody else is on the job here, you know there is a higher being, there's a God here who knows all about me. You know it was a really special thing and it gave me a ray of hope to go ahead in strength. Did you tell him? Yeah! He thought I was completely cracked you know and probably still does. You know, he said: 'She's hearing voices now, bless her.' "

As the pregnancy progressed Liz began to pray more and read religious books. Were you looking for something and it came to you or? 

"I think I was looking for strength and I really needed a kind of supernatural levels of grace and strength and something just to help me deal with it. I was also really interested in the connection between reality our life on earth, focusing on this helped me to take my mind off John. Praying was a source that relived any feelings of fear and stress. I was very reliant on, I needed God to get me through this.  I would often call out to Saints to intercede and one night in particular, I remember being assured that I would have this baby. I had a conversation with, what I believe, is an angel. I was assured that I was starting on a spiritual journey, but I kept thinking bout Brian... what about him? I was told to leave Brian to God. You're starting on a spiritual journey, Elizabeth, and I remember kind of conversing with this whatever was sitting at the end of my bed thing, what about Brian? Because he wasn't with me on any of this, what about Brian and the voice said: 'Leave him to me.' So I stopped trying to convert Brian or lecture him or say 'It's all fine, don't worry God has this all in hand & we'll all be grand. My attempts to try to convert Brian stoped and I had peace knowing that God was in this. I just said, well he's got his journey and I've got mine. we're running in parallel and that's OK. But I believe that if we have faith we contend to think that God doesn't care or think about others who don't. But I'm convinced that he does and he's in their lives too, but there is such a thing as free will and nobody can be forced and it is a mistake to try and force people."

John was born on the 8th April 2003. 

"Oh! John came screaming into the world  with a big fine pair of lungs and a full head of black hair. It was a really lovely moment to hold him, it was very special because the anxiety was over because he was finally here. He's mine and I love him."

Did you find yourself OK?

"He was kind of bundled up for the first bit and then gradually bit by bit I just kind of started having a peak and holding him. I felt incredibly protective, even more I just felt his vulnerability and I was also 'you, me against the world' kind of.  All his responses were good so we didn't have to worry about his brain.  And he just latched onto me and away he went. It wasn't fine in the hospital as it was a communal nappy changing area and so when I came in nobody was talking to me, nobody kind of looked at my baby. It was all a bit uncommonly quiet.

How do you prepare yourself to see people to confront the world outside? I just decided that I was not going to hide him away because I just didn't want John ever to get a message that he was anything less than acceptable. I can remember one lady, 'Oh! Look at the cute little baby' and she just pulled the blanket back. I don't know which of us was more shocked. She didn't know what to say and I didn't know what to say to her.  It's funny, you know, we fear the abnormal because we want everything to be fitting into a stereotypical normal."

Did the physical side of John, you know the way you're used to the different developmental stages and the crawling?

"That was all different. We didn't know what to expect, but after three months, I can remember John did a roll over, he kind of rolled over propped himself on his arms, he kind of beamed at us all, so I learned quite early on.  He doesn't see himself as ineprt. Once he figured out that he could do something, he would repeatedly do it. And suddnely he was on the move. It wasnt long, before he's was trying to drag himself up using his chin while he's hanging on to something. He did all the things an ordinary baby would do. He did it in his own way."

And now he's a young boy. 

"Yeah! He's 9. And he has same interests of every 9-year-old. He loves drawing. He's a great artist yeah! He swims and he rides horses and we've gone skiing, I've never put limits on him. Whatever he wants to do I'm there for to facilitate it, to maximize his potential and he has surprised me every step of the way. However, through it all, he has to find the connection with people probably every day in his life and to dispel that fear and nervousness going towards with disability, which people can have."

A few years later Liz and Brian decided to have another child.  Luke was born in 2005 but the family had another heavy blow. 

"It was great everything and normal just when he was about 2 ½, he got sick. But it turned out he had leukaemia. Eventually that diagnosis was made and it was quite far advanced. I was floored. I kind of keeled over and hit the floor at that point. But that was a very scary time I have to say, I was shaken to my absolute core.  Where was God?  God was, I suppose, letting it happen."

Did you think he was going to die? 

"I did at one stage, I was really scared that he was going to die, there was 90% saturation of his leukaemia cells, I knew it was pretty serious.  This particular day, I just, I got the fear really got in on me.  There is a little chapel in Crumlin Hospital. I went in there and I was really scared and I thought I was afraid of the dark, I was like a child, I'm scared of the future.  I just thought of my dad and just at that moment in my panicky feeling I had this instinct he was in the room, I just remember smiling, in spite of myself, it was out of myself, smiling and saying 'Dad'. "

"You know in the morning when you wake up all of that kind of panicky stuff had gone, you feel very connected with all of the people you ever loved and tapping into that and understanding. Parents are still around to help us, they know how hard life is and it's a real resource for people to just connect with. It's not about praying and going to Mass or not going. It's actually about reality, a reality we can't see it but it's there and it's there to help us.  I just think, if you collapse on the floor, you can just say 'help me' in this and there are so many people needing it. I just wish that we could tap into, on leave aside the Catholic church and all of that entails and the politics of it all, because my experience has being God has intervened in my life, so many times."

After 2 years of treatment Luke has recovered fully from the leukaemia, John leads an active life and attends national school but Liz is still his full time carer.  It's a huge journey.  It is. You're not halfway there yet?

"No and I don't try to look to far ahead either because anything can happen you know.  I know that is something that Brian used to try and kind of project forward and wonder 'How will he manage when we are you know old and decrepit.' But I think that there will be other people who will come into his life at that point, when we can't.  I've no reason to doubt that John won't find his way in life, it could be in any particular direction it doesn't matter really but that he's not going to be the raft of supports and friendships.  For a lot of us watching the paralympics this year, it was, you know it was a revelation to those of us who are not familiar or do not live the world that you live in."

Did John enjoy that as well?

"He did, he loved it, I think he got, he see himself now as aiming for that.  He's completely tapped into this world now and that's his future you know, the great thing about the paralympics it's a de-marginalized disabled sports and people were blown away by, the spirit, the human spirit. It helped people see that disabled people in a different light as stop looking at their disability and see what they can do and give them achievements."

For Liz, John has never being a burden but rather a blessing it has also brought her closer to God. 

"I suppose there is a part of me that's wondering your faith is so strong but yet at the same time but if it's so strong there doesn't seem to be any anger towards God.  I don't see, I just see anger as a very unhelpful and negative thing an emotion, you know, being angry at God for sending me a baby, because what I have experienced spiritually and what I have seen with having had John and being his mum and watching him grow up that's only become stronger. Because I look at what I could have missed, this just joy, this beam of light who touches so many peoples lives, so I just saw, always saw this as part of my life journey towards God, towards a relationship with God and that certainly John has being the means for that to happen.  We don't have to be killed by the experiences of life, they don't have to kill us off emotionally or spiritually and turn into kind of angry, resentful people, you know if you, the two images I have are kind of  facing into the storm, there is a storm coming your way don't run from it, walk into it, don't try and do it on your own try and bring God into it with you and you'll be amazed at what happens."

"I've probably become increasingly more orthodox and see Catholicism as something there to guide me. Sort of a North Star for me to live my life by and to have those anchors and to have that knowledge, certainty of that knowledge there for me until I take my dying breath is what helps me go forward."