Life Is Like A Box Of Chocolates - The Genesis Of Baby Gavin John

September, 1977

by Alvera Bruwer

Well the day had arrived. I had been for the foetal x-ray which had said 36 weeks and no bone abnormalities.

My doctor had decided to induce as he said i would have a much shorter labour than with my other two children which were both quite long.

My youngest child, a boy, was nearly seven and the eldest, a daughter, nearly ten. We had not planned on having anymore but there it was, I was pregnant after all this time. In the beginning I was not at all thrilled but my husband and children could not wait. My daughter wanted a sister, and my son a brother.

I did not enjoy my pregnancy at all. I had low blood pressure and had the most terrible head-aches. I also had a few dizzy spells at the most awkward moments. Once in a classy restaurant, and once in the car while I was driving which gave me quite a fright. The morning sickness which I had with the other two children, and was dreading, just did not appear at all.

After seeing the doctor at eleven thirty my husband and I went for a cup of coffee, and walking along, I got a pain in my back. Not really worrying, I thought it was most probably just because my doctor had given me an internal examination to see how low my baby’s head was, and went merrily on my way.

I had to be in the hospital at six o’clock that evening and decided to have my hair done before going in. My husband decided to stay with me this time as he had not done so with the other two. So i decided I must really try and look good seeing he was going to be there at the birth.

The whole day I had these little niggling twitches in my back and in my sides but nothing really bad. I was dreading the induction as I had never had one before and had heard the most terrible stories about it.

As we entered the nursing home I got the most terrible feeling – excitement and fear of that which was to come. After I had changed into the white gown the sister came in to examine me. Well I was 3 fingers dilated and hoping that I would not have to have the drip as planned.

My husband decided to go home and have his supper and check on the children. By the time he got back I was sure I was having contractions. And the doctor had not even arrived yet. My husband said it was all in the mind, me dreading the induction and being in the labour ward.

Well my doctor arrived at 20:30 and I was getting 10 minute pains. He decided to put me on the drip after all as it would go quicker.

He broke my water - about a cup full - and we were on our way. The pains were not that bad and by walking around, drip and all, it eased the contractions.

My doctor had gone for his supper and when he got back I was in strong labour. Having my husband with me made such a difference. He rubbed my back and wiped my face (and hairdo) and it was super just having him there.

All of a sudden I got the most terrible urge to bear down. My husband shot out of the delivery room and called the doctor. Shame, he must’ve thought that he’d have to deliver the baby himself!

I was more worried about my husband as I know he can’t take anything to do with sickness or hospitals. Well he stood at the bottom of the bed and watched.

About 6 pushes and then it was all over. I heard my husband say it’s a boy and I said well it’s Gavin John, as my husband liked the name Gavin and my son liked the name John. I could at that moment only feel such a relief and didn’t mind what it was.

Once the cord was cut the sister wrapped him in a sterile sheet and took him away. I remember asking the doctor why had they taken him away and he said that they had to weigh him. The time was 8 minutes to midnight.

All of a sudden it was very quiet. Before my husband and the doctor had been joking about when our baby was to be born – the 19^th or the 20^th of September, and now they were both so still as the doctor stitched me.

I think then I knew something was wrong with our baby. When the doctor went out I said to my husband that I know there is something wrong. Why have they taken my baby away.

In a little while the doctor came back and told us our baby had deformed hands and feet. His eyes were squint, his face on the right side was dented and it looked as if his shoulders were not developed and drooped. I asked to see him and when he was placed in my arms he looked right into my face and I knew no matter what was wrong with him I loved him.

I opened the blanket but subconsciously I didn’t want to see, so I never noticed anything wrong at all. He looked just like my other two children when they were born.

After I was put into the ward I was going to go into the general ward, but was put into a private ward instead. I think then it only got through to me.

He was so tiny, 2490 grams, and so much wrong with him. Could he survive?

Our doctor was really super and my husband, who has a marvellous outlook on life said, well he is our son, and it’s going to be a battle but all of us as a family are going to have to help to get Gavin John moving.

The next morning a child specialist was called and he said he would like to have him transferred to a general hospital where there is a doctor who specializes in hands.

So he was transferred to the general hospital where he was for 3 weeks. He had a problem drinking and was tube fed until he was given an orthodontic teat. Going to visit him was terrible, having to leave him there and when we got home the children asking who he looked like and when we can have him home.

Well we made arrangements with the sister in charge to allow the children to see their new brother, and I must say the staff were wonderful. Nothing was too much trouble for them. They allowed the children to stand at the nursery door and see their brother for the first time. How thrilled they were. How wonderful were our family and friends. People were so kind, praying for him all over South Africa. And I knew it all helped.

One Sunday morning we had got back from Church when the hospital phoned to say we could have Gavin home as he was drinking well and they would not start with his operations yet, he was still too young.

Well it really struck me. I did not know if I could handle it. In the hospital I had given him his bottle, but he was always wrapped. I did not want to see his hands and his feet or his face. I was scared that I would shudder and reject him.

I must have taken half an hour to dress him I was so nervous. Seven years is a long time and now handling this baby with all these things wrong with him.

On his right hand his little finger and ring finger are joined together. He has no middle finger and his first finger and thumb are joined. On the left hand his pointing finger lies over his other fingers, but the hand is perfect, he has all his fingers. His feet are turned in, but he has all his toes.

When we told our other children my daughter said; “At least Mommy he HAS eyes.” Then I realised it could have been worse.

Well he is now 3 months old and we all love him dearly. We realise he has a long way to go but he will make it. His face has filled out on the right side, his eyes have even improved, although he will still have to have an operation.

He moves his hands although he still has a problem with his shoulders and his left arm only has 90% movement.

He is a happy, contented baby and laughed out loud at 2 months even though he can’t smile because of his facial muscles not being fully developed.

 

 

 

 



Original Of The Species - The Saving Grace Of A Song

Where The Streets Have No Name

On a morning in late 2004 Our Hero – that’s me in case you’re wondering – a mild-mannered cellular service providerman was sleepily walking through a shopping centre in search of a good breakfast and a hot cup of coffee.

He was rather proud of the fresh beard he had been cultivating since the day before – Designer Stubble, I believe they call it.

It was the morning after the hard day’s night before, and Our Hero, fresh from single-handedly saving the world on the night shift he had just worked, most definitely did not feel faster than a speeding bullet, nor able to leap tall buildings with a single bound either.

Today was his day for rest and relaxation; to kick back and put his feet up on the table inside his Fortress of Solitude; today was his day just to breathe and to be.

Suddenly from a coffee shop nearby a voice called out to him. He was rather reluctantly awoken from his dream-like thoughts.

“Excuse me,” the voice said again. It belonged to a man sitting at a table near the doorway of the coffee shop. Excuse me brother,” he said again. “but did you know that God can HEAL you?”

I was both dumb-founded and flabbergasted at the same time – if that is possible. What did he want to heal me from? I wasn’t sick! ‘Ookay, heal me from what?’ I thought just as my eyes caught his gaze on my hands – and then I realized.

“Come brother, pray with me!” He implored from behind his open newspaper and his cup of coffee.

I was taken aback by the speed of this supposed conversion. If only he knew that he was about to preach to the choir! Just not the choir of HIS particular Church!

“Err, no thanks.” I said recoiling a bit. I didn’t feel any other explanation was necessary, and frankly I was too surprised to string the words together. “You don’t want to pray?” He asked, as if I had 666 painted on my forehead. I walked off without saying a word, my mind still perplexed by this puzzling incident.

Having Moebius Syndrome, to me, has always been a bit like being a super-hero. You walk around all day with strange, special features that nearly no-one else has, yet you don’t think of them much, as you are comfortable with just being you in your own skin. In fact sometimes you even forget that you have them!

But then suddenly something happens and you realize that “This looks like a job for Superman!”

This was how I felt that early 2004 morning, like suddenly I had been reminded of being the only son of the planet Moebius – or so I thought at the time! (At the time I had yet to meet others who had the same syndrome) It dawned on me that no matter where I am, or what I am doing in life, that I will probably always get little reminders of that, even if all I’m doing is just getting on with my day. And that made me sad.

Mysterious Ways

Despite my plans to have breakfast and catch a movie I was so shocked by what had happened that I started to wonder aimlessly. So aimlessly in fact that I wondered straight into my own personal Forbidden Zone - Musica music store.

The first thing that caught my eye when I entered the store was the brand new U2 album, How To Dismantle An Atomic Bomb, standing proudly on display.

I knew it had just come out but due to "budget constraints" I wouldn't really be able to afford it, or at least I shouldn't really be able to afford it!

I had been a mega U2 fan since their previous album entitled All You Can't Leave Behind which came out in 2001.

With Or Without You

Of course I had known their music long before that. I was introduced to U2 while being babysat by my brother one school holiday in 1987, when we were sitting at the dining-table eating Pronutro breakfast cereal for lunch.

Even though we were 7 years apart my brother and I have always enjoyed a special relationship. In a way we were kind of like twins, except that he got all the good looks - and all the fingers! We were inseparable.

But now something strange had begun to happen to him. He was becoming more funkier. His best friend's sister had given him a weird haircut, he started to wear an earring (I swore I wouldn't tell Mom and Dad) he had acquired a sleeveless t-shirt that read "Sex instructor - first lesson free!" (Again I promised not to tell Mom he was still wearing it after she had banned him from doing so.)

Even though I was a beginner, I had become quite an avid reader, but I had never encountered the word 'sex' before. My Kathy And Mark reading book at school was full of interesting new words, but I had never seen them mention sex before. Perhaps I should ask Mom what it meant, I thought.

And last but not least his new religion had become a bright yellow, almost glow-in-the-dark shirt - It WAS the 80's, after all! - a brooch, and a pair of black trousers - go-go pants, as my dad liked to call them.

And so it was on this fateful day that we spent eating breakfast cereal for lunch that I was introduced to U2 and their magnificent Joshua Tree album being played on my day's sound system. And even though I took an instant liking to Where The Streets Have No Name, I Still Haven't Found What I'm Looking For and With Or Without You, I decided that I shouldn't like this band because they had irrevocably changed my big brother in some way, and I wasn't too sure if it was for the better just yet.

So unsure was I in fact that I eluded U2 fandom throughout my teenage years, apart from listening to and liking their stuff being played on the radio and at friends’ houses.

Love Rescue Me

My next groundbreaking encounter with Bono and the boys happened while I was nursing a broken heart after suffering a loss of note in the love department.

The lady in question had not only slid under my skin but into my music collection as well. So much so that every song I listened to just reminded me of her.

So it was time to try some new music. I had heard and fell in love with their Beautiful Day - and decided to buy the album, which proceeded to once again put a smile in my heart, a song in my head, and a skip in my step.

“Take This Soul, Stranded In Some Skin And Bones..."

And so it was that I took hold of the new U2 album, walked over to the listening booth and prepared to dismantle an atomic bomb of my own. The atomic bomb of being singled out for being different.

What really bothered me about the whole ordeal was that I had suddenly realized that things would never be different because of my having a difference. I may get passed a certain shy, awkward phase of life and feel more comfortable with it, but wherever I go people would always see my difference before they saw me. I had never really realized that before and the thought of it just absolutely overwhelmed me.

The other thing was that for as long as I can remember I believe that I have been having a dialogue with God because of why I am the way I am.

I have never actually asked why, mainly because I have always had an overwhelming belief that there was a reason for me being the way I am.

I believed that God, although he may have had some doubts at times, was generally happy with me being the way I am; as was I.

I have never believed that Moebius was an affliction, or a disease that I suffer from. I believed, and still do, that it’s a part of me, not all of me, just a part. And I live with it on a daily basis. Just as some people live with having brown hair or green eyes.

And so for someone to try and use my own beliefs against me to try and convert me, just seemed more blasphemous to me than my not wanting to join in prayer was to him.

Miracle Drug

Music, to me, has always been capable of soothing my savage breast. I have been through some pretty tough things in my life and I don't think I would've made it through any of them if it weren’t for that little miracle we know as music.

And so it must've subconsciously been with this thought in mind that I found myself in the listening booth, putting the headphones on in preparation to listen to the latest U2 album.

I immediately became immersed in the music as my ears were hit by the first few rock-driven guitar notes of the opening track called Vertigo.

Slowly but surely as time ticked on a window started to open somewhere in my mind and the hurt that I held in my heart because of the happenings of that morning seemed to lessen as I listened.

Next up on the track list was a song called Miracle Drug. I was to find out a few months later that it was written about an Irish author by the name of Christopher Nolan, who was born with a disability that only allowed him to move his eyes.

Later on a drug was invented that would enable him to move his head and this led him to write the must beautiful poetry and prose. Hence the title of the song, Miracle Drug. All four members of U2 had attended the same school as Christopher Nolan had, and had met him there.

I have to confess that I skipped through most of the tracks that would become the soundtrack to my life for the next few years, until I stumbled upon one which was to forever change my way of thinking about myself.

"Everywhere you go you shout it, you don't have to be shy about it."

Still skimming through the tracks I alighted upon a slow, soft, melodic intro of a song called Original Of The Species, that instantly caught my ear. The words to follow soon caught my heart.

“Baby slow down,

The end is not as fun as the start,

Please stay a child somewhere in your heart."

Bono sang.

On hearing those words I did slow down, as my heart and mind were both racing a mile a minute after my strange and close encounter of the turd kind.

I reflected on how I had always looked at life through the eyes of the child that I still was and how, for that reason, I had come out of many hurtful and hateful situations I had been placed in due to my disability because of my naive belief in myself, my abilities and the fact that I thought I was like I was for a reason.

Now that I was an adult there were certain things I had to face and overcome which would make the innocence of childhood seem like nothing but a dream.

"I'll give you everything that you want,

Except the thing that you want,

You are the first one of your kind."

The song continued.

One of my favorite stories as a child was that of Pinocchio, I even named my boyhood cat after one of the characters from the animated TV series.. Even at that age I could identify with his story of wanting to be more than he was. Naturally because of the rarity of Moebius syndrome I had always felt like I was the first one of my kind, and that I was like no one else before.

"And you feel like no-one before,

You steal right under my door,

I kneel cause I want you some more,

I want the lot of what you got,

And I want nothing that you're not.

Everywhere you go you shout it,

You don't have to be shy about it."

These words spoke straight to my heart and lodged themselves firmly into my soul.

I got the feeling that somebody, somewhere was trying to tell me something about myself, the experience I had that morning, and the way that He felt about me. But if God was good at infomercials his "But wait, there's more!" part was about to come round.

"Some things you shouldn't get too good at,

Like smiling, crying and celebrity,

Some people got way too much confidence, baby."

I am, of course, not that good at smiling, but crying and celebrity are things you can get good at were you to have a rare condition. Not the celebrity of the wrap around shades, rock star variety of course, but rather the fact that you are always noticed wherever you go. It can be soul destroying if you let things like that get to you.

i have never let myself go in that direction, but its easy if you try, and even if you don't, but i have always been a proud person by nature and determined not to go down that route. Deep down inside i am just as normal, or abnormal, as the next guy!

Some people, like the coffee shop Christian, do indeed have way too much confidence - and in his case maybe a bit too much coffee - baby.

There was nothing wrong with being who I am was the message I got that morning. Someone up there seems to like me, and He just happens to be a U2 fan too, I suspect. Never had listening to rock music been such a religious experience!

I was once lost but now I was found, and my soul and my sanity had been saved by a song.

The Light In Your Eyes

Someone once asked me if I had ever questioned why I am the way I am. My answer was simply no. Questioning why I am the way I am is a bit pointless as things already are the way they are and no amount of questions could change that. Even if you ask as many as I do!

I believe in God, or a Higher Power, if you will. My faith and belief stems from what I have experienced in my own life though rather than something I was taught. I don't believe that I was made to be like this, I think that it's more complex than that, but I've always rather naively believed that there is a reason for me being the way I am. I may not always know the answer but in recent years especially I have begun to see what I think may be the reason.

I think that the most powerful and meaningful of things we can do is to reach out and touch the life of another person. And for me, being as unique as I am, I can do this without even trying, or knowing that I am doing it at times.

A few years ago I was admitted to hospital to undergo a relatively minor procedure. But what turned out to be a short visit turned out to be a rather long stay. I am of course no stranger to hospitals and have indeed spent a great deal of my life as a child either visiting them in order to see certain specialists or as a patient in them. I used to rather enjoy it as a great deal of fuss always used to be made of me and you get a lot of visitors who all come bearing gifts.

This time around however as an adult I found myself to be suffering from intense boredom after just a few days. There's only so many books you can read and so many TV shows you can watch! It was probably aggravated by the fact that unlike all the other times I was mobile and able to walk around.

And just after a few days walk around I did! After breakfast I would take a leisurely stroll through the hospital garden; on Thursdays - Theatre Thursdays - I would check out the action outside the operating theatre. I was quite entranced by the chemical smells as it brought back a flood of memories of being operated on as a child, most of which I had long since forgotten.

I had my own little fan club in the nurses of the surgical ward who all thought I was fantastic because of my personality and sense of humour. I was asked to meet family members of theirs on more than one occasion. And I even had a potential "love interest" in a beautiful nurse from the intensive care unit. The only problem was that I'd have to go to extreme measures in order to be able to get close to her in the ICU which I wasn't at all prepared to do!

On one such a morning walkabout while I was engrossed in reading the  maintanance instructions on the defibralator which stood always at the ready in the corridor of the surgical ward, I heard someone calling to me.

The voice belonged to an elderly lady who lay bed-ridden in one of the semi-private rooms. Her name was Rose and she had been wanting to meet me for quite some time as she had always heard me chatting and laughing with the nurses. She had been in the hospital for quite a long while and wanted to lift up her hospital gown to show me where she recently had surgery. Now if she was a bit younger I wouldn't at all have minded that prospect, but since she was rather old I was very hesitant to see! She lifted up the sheets and her gown to reveal that both her legs were bandaged and in a type of stocking. At the time I felt it a bit impolite to ask any questions and just carried on chatting to her.

I went to visit her everyday after that while doing my "morning rounds" after that. She was a very sweet and kind lady who loved nothing better than to watch the birds from her window. She reminded me a bit of my grandmother who had passed away a few years earlier. We chatted quite a bit and I noticed that she always seemed happy and pleased to see me.

On my last morning in hospital - an unexpectedly sad day for all on the Kingsbury hospital surgical ward, myself included! - I went to say goodbye to her. She told that me she was going home soon as well and couldn't wait to get out into the garden and be with the birds.

A few weeks later, after I had some time to adjust again to the hustle and bustle of the reality of life, I had to go and pay the anethetist's account directly at the anethetists' association. Strangely, this has been the only time since paying my own medical bills that I have been asked to do so.

As I was waiting in the reception area to see the person in charge of the accounts I noticed that the receptionist was looking me up and down. Now when you are a rather unique, limited edition of the human race like me, this is not at all odd but rather normal. But even this to me felt a bit unusal, and finally the lady approached me.

"Excuse me," she said. "Were you a patient in the Kingsbury hospital a few weeks ago by any chance? Is your name Gavin?"

To us who have Moebius this is of course not in the least bit odd, as we are a bit like Tom Cruise without the money, good looks, great job, weird religion and beautiful ex wives - everybody notices us.

"Yes I am," I replied.

"You met my mother Rose, who was also there," she said. "She spoke very fondly of you."

I smiled inwardly as I remembered our morning visits together.

"Yes, I did." I said in a friendly tone as I marveled at the coincidence.

"I have to tell you that she died of cancer last week." she said.

I felt overwhelmingly sad as I suddenly realized why Rose had been in hospital.

"I just want to tell you," she went on as her voice started to tremble, "that you were such an inspiration to my mom. You gave her such hope and courage in the last few days of her life."

I was for once at a complete loss for words - which is a rare occurrence for me indeed!

I really had no idea what my morning visits to Rose must have meant to her. For me it was just a way to be friendly and to relieve boredom. But to her I must have been a lifeline during some of her darkest hours.

Without really knowing it I was reaching out to her and bolstering her spirits during a great time of loneliness in her life. Here's the thing though - I don't think it was really me who was reaching out to her, but rather someone or something else that wanted me to.

This is only one such incident in my life, but it is the one that has touched me the deepest.

By my own admission I am not very religious, in fact I have issues with the so-called Holy Joes who thump their Bible at every given opportunity and who display their righteousness for the world to see, but yet won't stop to help someone in need. In fact that kind of attitude on many occasions has made me question my own beliefs.

I am not perfect and I don't claim to be. A few thousand years ago a really interesting guy who could do some amazing party tricks at weddings chose to hang out with the lepers, the blind and a whole bunch of other undesirables. Had I been there he would've probably hung out with me too.

I think no matter who you are or what you believe - and even if you don't believe - that this force of goodness resides in every one of us. And that it works through us when it needs to.

I believe that on this occasion it worked through me and came from my heart, which ironically is the same place where my smile comes from.