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My Story  Daniel`s early days written  2001

My story starts before my child was born. The doctors gave him little hope. They said they believed he would die before he reached term?  Abortion was advised. Having just lost a little boy Callum who lived all of four hours there was no way I would even consider an abortion. I was six months pregnant my unborn child was very much alive moving and kicking about.

I battled on against all advice. At 37 weeks he stopped moving. It was like history repeating itself. My first baby died as a result of placenta abruption. I was prepared for my second emergency c/s. was I going to go through all this again with no baby left in my arms?

Images shot through my mind. The doctors had described this child I was having as some kind of freak? How was I going to cope? My heart pounded then I saw him. A little boy who had a few problems, but looked as beautiful as any other new born child. Things were going well when he suddenly turned blue. I was left on the recovery table just hoping and preying. After a while a trail of people came into the room.

The doctor began. Your baby has a fatal disorder we don’t expect him to last the night. I felt sick was I going to bury another child I had longed for? They arranged for me to go and see him. After such major surgery I knew things must be bad for me to be allowed to be moved from the bed. The nurses took photos and prints of his hands and feet. I touched him. I was in a lot of pain they sent me back to the ward against my will promising to send for me if there was any change.

The night went slowly every time someone came near to the door, I would jump with fright expecting the worst. Morning came he was still with us. I began to feel my first bit of hope, only to be brought crashing back down by the doctors negativity. The test results didn’t arrive back till a week later.

During the week  the days were just a daze. The emotional strain was incredible as soon as I felt a glimmer of hope they stuck the knife in yet again.

My fighting spirit began to return. The week should have turned me into a jibbering wreck . Id gone trough so many heartbreaking situations. For example they refused to feed him saying his stomach wasn’t formed properly. He kicked up that much of a fuss they fed him they were wrong his body digested the food as it should.

Anyway back to the results. I remember walking into the office and telling them they were negative before they had time to answer. I was right. They decided tot give him a condition that is so rare I have been unable to trace any child in the world that has lived over the age of one.

The negativity was back amongst the hospital staff. He wasn’t expected  to do anything a normal child would do. They didn’t expect him to come off oxygen but he did.  After a few weeks we were allowed home.

The first year was very difficult. He put on weight that slowly the health visitor was tearing her hair out. Again this was a time when we had our fair share of ups and downs. The consultant told us they believed he would be a cabbage and not develop at all.

Well it was about time we fort back, we1d show them. Even though my little bundle of joy had undergone two operations, had overcome heart problems ect.  I’d also been ill I was rushed to hospital with two blood clots on the lungs and also had an operation to remove my gall bladder. A few times I was under the care of the special baby care unit doctors myself staying in a flat on the ward as I refused to stay in my hospital bed and wanted to be near my baby.

I started to work on my special little boy. We reached goals they said he’d never reach. It hard work but it’s worth every minute. Vie since had another baby without any problems

My little boy is now nearly 4 years old. He is still unable to communicate as we do but myself and people who get to no him can understand his needs very well. He is about to enter main stream school after a big fight with education. Having a special child means you have to fight all the ways for what is right for them. We have a very special relationship.

I suppose the moral of this story is having a handicapped child is not the end of the world. Watching them achieve what an able bodied can do is a wonderful experience. Knowing how hard they have worked to get that far pulls at your heart strings

Having a special child is hard hard work. If I hadn’t put every effort into helping him maybe he would have been the cabbage, the way doctors described him. Since he was born I never gave up hope. I joined special group, spent all of my time with my boys. (Having too small children that our ok is a strain on its own)  You have to repeat things you do over and over again to help them understand. Most of these children enjoy music and songs especially action rhymes, anything colourful. Special lighting and anything that they can feel against there skin lots of different textures to feel. They also enjoy swimming this gives them freedom of movement without the strain.

At times you can feel down especially if you get no response but remember they have there off days just like you and I. sometimes it can be a step back but they also jump two steps forward after a while. Never ever give up hope. Give them the best you can give, treat them as you would an able bodied child to a certain extent. Every effort you put in you end up with triple the amount back. You get so much love and affection off these children.

If you’re the parent of a handicapped child your not alone. There are lots and lots of others out there just like you and I. Don’t feel sorry for yourself, adjust your life to include your life to include your special child. Just remember there are lots of people also out there who have lost a child or long for a baby and our unable to have one. Ours maybe different but at least they have the gift of life. Do everything in your power to make sure there life is a happy one like they deserve.

True story written march 2001



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