Christian Jonathan Ridey

Born: 2 October 1998 at 6:32am, 3.365Kg, 50cm long, BOY, named CHRISTIAN JONATHAN RIDEY.

Although the delivery was without any complication and both the mother and baby were doing very well, Christian was diagnose with 'Down Syndrome' (or Trysomie 21). Christian will need Open Heart surgery in the next few weeks. I will keep you all updated on his progress through this web page.

11 March 1999.

I don't know how I am going to put in words what has been happening, but I'm going to start and try.

Marc and I were so happy when Christian was born on 2 October 1998. Christian was in a hurry to come out and see the world taking only 2 1/2 hours. We were lucky to get to the hospital on time. The doctor just made it to catch Christian coming out. Family and friends were so happy and proud. I was feeling much better this time and made a quick recovery, even though I fainted after birth. The nurse slapped me on the face a couple of times as I was out of it for a few minutes while I was being wheeled in the wheelchair to maternity ward. Do I get a reduction on my medical bill for that? I don't remember this and woke up wondering where I was.

5 days later, just when I was ready to go home to start a new life with a new baby in the family, our world was shattered by news from the doctor that Christian was diagnosed with Down Syndrome. I couldn't believe it. It was the biggest shock of my life. I didn't believe it. We didn't understand it. How did and why did it happen to us? So many questions. What do we do now?

(Add Explanation of Down Syndrome )

Welcome To Holland

by

Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved.

Matthew and ...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

BACK TO CHRISTIAN

As the news spread to friends and family I felt worst. It didn't matter what I said or did - it just didn't matter. I felt I had been robbed of the joy and happiness that other parents have when they have a new baby. I was jealous of all other parents who had a healthy babies and worry over the silliest things.

The pain wouldn't go away. I wanted a miracle to happen. I didn't believe it was happening. It was a time of grieving. All my dreams and hope had been shattered. Will I ever see clear blue sky or ever laugh again. If you gave me a million dollars or a million Snoopy I couldn't even pretend to smile.

A few weeks later, the doctors told me it was definite that Christian would need Open Heart Surgery. I was heartbroken, hurt, depressed and I wanted to leave earth and come back when this nightmare ended. Words cannot describe how I felt and to relive them brings back too much pain.

(Add explanation of VSD)

On the 9 Dec Christian had open heart surgery at Westmead Children's Hospital. He was in Intensive Care Unit for 7 days in stable condition. What made it difficult was seeing Christian lying there still with all tubes and wires coming out of him and feeling helpless. Willis fainted seeing Christian in hospital.

The time leading up to Christian's surgery was very difficult as we feared the unknown of what's going to happen. We went through a bad patch of bad luck that it seem like it would never end. My mum had the flu and couldn't help look after the kids. James also became very sick and had to stay with my parents as we couldn't risk Christian getting sick before the operation. I lost my wallet with $200 and credit cards etc.My car broke down. Kids broke into our garage the 2nd time and stole bottles of softdrink and broke the lock. Marc became sick and then I got sick too.

After the 7th day, Christian recovery was quick and he came home on 22 Dec, just in time for Christmas. James and Christian had his photo with Santa. We were happy that Christian was home and had a quiet and peaceful Christmas Day. On Boxing Day 26 Dec Christian went back to hospital for 3 days for observation as he had a chest infection. He returned home on 28 Dec to celebrate the New Year 1999, to recover and start to enjoy a family life.

In January, I saw so many doctors but they all said Christian was doing really well. The New Year seemed to have changed our bad luck into good luck. It was a new start and life just got better and better.

After all Christian has been through he proves to be strong and happy child. He talks (cooing) and smiles a lot. He is putting on lots of weight. I believe Marc and I will give Christian a happy life. Now we are commited in loving him and giving Christian a happy life and that is all that matters. Some times life does get difficult but not as difficult during that time and now I am so happy to have Christian is our life that I could not think of the world without him. I do see the clear sky and look forward to a bright future now and I am now able to laugh naturally.

WRITTEN OCTOBER 2005 for Life Stories Course

BUS STOP NO. 49.

I recall a moment in my life:

I was 13 years old catching the bus home from high school. Happy school was over for the day and on my way home. Here I am sitting on the bus enjoying the sunshine, sitting up the front of the bus while the naughty kids sat at the back of bus or were running up and down the aisle, even though the bus driver told them many times to sit down.

One of the kids – a boy – he came and sat next to me and looked at me and said “I love you” then he put his head on my lap. I felt uncomfortable and I squirmed a little – I didn’t know him - his head is heavy – should I lift his head off my lap or will he hurt himself or will I offend him? What should I do? Are the other kids watching me? Within a moment he lifted his head, gave me a smile and jumped up and ran up and down in the aisle of the bus, as if nothing had happen. I was relieved that I didn’t have his heavy head on my lap any more, and no one really noticed.

Later that day, I recalled the incident to my mum and asked her what I should do if that happens again. I remember telling my mum, that this boy had Down Syndrome as I knew he looked just a little different and he acted a little different than normal. I said: “It must be difficult for the parents to look after this boy.” My Mum answer is “Yes, but these parents are special too, these parents know how to take care of this boy.” My Mum, she is smart and she knows all the answers.

And with that answer I was happy and moved on to the next moment in my life.

Never realising in the future that I would be one of these parents and that particular moment in my life would stick out. 

MANUAL OR ELECTRIC?

Manual or Electric? The pharmacist assistant asked “You can buy the manual breast pump but you will have to rent the electric breast pump”. I could not answer, this question was so difficult as if she was asking me life or death and if I answer the wrong one there would be a major consequence that I would have to face. . She is still waiting for an answer, she isn’t saying anything more, she is probably thinking, hurry up and answer the question so I can deal with the next customer. What is wrong with you? Just answer the question so I can move onto the next customer. Please I don’t know how to do with you, Next customer please! Someone who is in control

Tears were now rolling down my face, there was no sobbing, no sound, nothing. I could feel the tears enter my mouth but I did nothing about it. I can hear the other people in the shop, maybe aware of my crying maybe not - surely they do not care, life is continuing as normal for them. I do not care either if they see me crying. I can see the shop assistant waiting patiently, maybe waiting patiently for me to get back in control and give her an answer. I can not give her an answer, I can not explain, this moment is still, the silence is awkward. I wait for her to say something but she said nothing, because it is my turn to speak. I should be giving her an answer, it is my turn to speak, but my mouth isn’t moving, there is no sound. Here I am, not answering, not in control, more tears fall from my heavy eyes, so much stress and pressure that I can hardly stand. My posture was slump, my head low, my mind was elsewhere, far far far away. I can not think of anything else – my mind is on my child – the image of Christian lying on the operating table with the surgeon operating on him to fix his heart. Open heart surgery at 2 1/2 months old baby. I feel so weak, his life is in others people’s hand, I have no control. 

My husband, he is there, he is trying to comfort me, even though he is breaking inside too. He politely excuses us and takes me by the hand and leads me out of the chemist. He discusses with me why it would be better an electrical breast pump and that everything will be okay. His touch is a comfort to me as I start to compose myself and get back into what little self control I had left.

We go back into the chemist and rent the electric breast pump. I don’t apologise, I don’t say anything, I don’t explain and she doesn’t ask either. It’s kind of awkward and I am glad this moment has passed.