18 June 2013

Amuse-bouche


You may wonder why I am writing this blog. What is the story behind it and why choose the name, I dream of Daisy?  I thought I would explain the background in more detail.

I was born with one of the most life limiting genetic conditions among the Caucasian population and I grew up thinking I would never have children.  Although it is physically possible because all my parts were there, the strain of carrying a pregnancy to term could put me in grave danger.  Growing up, mortality and procreation was a topic generally not discussed at hospital appointments and was definitely never discussed at home.  There are questions you just don’t ask for fear of the answer and some things you are best not knowing.  I remember at one point the life expectancy was around 30 years and I lived my life thinking that I would drop dead on or around then.  Medical science is advancing but even more important, is your mental ability to fight for life, live your life and look after yourself.  I am sure that together with the improved medical science it’s possible you could beat the odds against you but complications associated with carrying a pregnancy to term and mostly the thought of leaving a young child without a mother, I always thought that it wouldn’t happen to me.  I had spent my childhood and young adulthood preparing myself for that life, a life without a child of my own to love because of my health. 

My mum brought my brother and I up on her own and throughout my life she has been the one teaching me to stand up for what I wanted and encouraged me through the hard times.  It is her get up and go, her belief in me and her positive attitude that has taken me to where I am today.  I owe her for allowing me to believe I can lead a "normal" life.  In my late teens mum gave me further hope that I could maybe have a baby one day by offering to be a surrogate.  She would joke that by using her I could be assured of the baby being handed over.

In my early 20s I met the man who later was to become my husband and I did explain how a life with me would most likely result in a life without a child.  In the beginning he explained that it was me he wanted to be with and if we didn’t have children, it wasn’t meant to be.  He was in the armed forced and was posted in Germany and to enable me to join him we decided to get married.  I was excited as I planned our wedding and was looking forward to us spending our life together.  When the Army learned of my condition they would not allow me to join my husband once married due to fear that they could not cope with my often hectic, treatment regime.  Looking back, I can partly agree with this decision but at the time the pressure of planning the wedding and the uncertainty of how my husband and I would be together caused too much of a strain on my health and I lost a lot of weight.  

We did fight the armed forces and in the end my husband got posted locally and later left the Army, which meant we could finally be together.  It was when we were together that his desire for a child grew and we had several discussions about it. After six months of talking and thinking and two young people I knew that had been taken away from the world in such a cruel way, I decided life was for living. I was going to take a risk and have a child, the one thing I never even allowed myself to dream of.  I told my husband that yes, lets do it, lets have a child and at this point in time my life was on the up.  I realised that I was happily married to my husband and life can throw you surprises; even those living without my condition don't know what tomorrow holds.  I had a husband wanting to be a dad and I could have a child and be blessed with being a mum.  I just knew that I would love my child for as long as possible and that together we were going to create good family values and that he would be supported by my family if that fateful day came……..where I had to leave them.