The story of Jessica’s undiagnosed condition has been told
already and I do not intend to go over old ground. For those who do not know then please refer to the video http://www.youtube.com/watch?v=zvsmC9uk08Y&feature=share
This gives a brief explanation.
I have been asked many times how I feel about this and how
it has affected me. I think sometimes
people are somewhat surprised at my reply.
It was suggested I write down my feelings at the time of finding out,
and now – so here goes:
I knew there was something ‘not quite right’ about Jess a
couple of weeks after her birth. She
looked slightly different and seemed to be in a world of her own. There were no smiles then from her, just
staring into space and attracted by any bright lights. It worried me greatly, but how do you begin
to have a conversation with your Daughter that is suggesting there might be
something wrong with her baby. What if
I had said something and was wrong, after all I was basing everything on
‘mother’s instinct’, it had never let me down before but there is always a
first time. As the video explains, Emma
did take Jess to the Doctors as she was not putting on any weight and did not
seem to want to suck her bottle for very long but the doctor had said there was
nothing wrong, perhaps a bit of silent reflux, Emma was given the impression
that they thought she was just being over-anxious. We sat at the hospital Emma & I with Jess only to be treated
to more of the same. This was so
wrong. I felt so frustrated, how dare
they think my Daughter is just being over protective, she had already got one
Daughter, she knew when something was not quite right. I wanted to yell at them, demand things from
them, but I knew this would not do any good and Emma was doing a good job on
her own getting them to finally agree to do tests etc., without resorting to a
show down. If you have watched the
video you will know that the tests came back negative and Emma & Ben paid
to get an M.R.I. scan.
I will never forget the day we were told the results. Rob and I had taken Natalie to the park and
had a lovely afternoon out with her. We
went back to Emma & Bens. Yes we
had been anxious wondering what the outcome was, but nothing could have
prepared us for what we heard. After
all the tests they had done at the hospital had come back negative so there
could not be much wrong surely?
Her brain was underdeveloped and parts not formed. The Consultant had said it was not
good. He doubted she would ever be able
to walk, sit up or have a conversation; the list seemed to go on and on. The Consultant had ended by saying her
future was very bleak.
It was like being caught up in a nightmare. I just wanted to wake up and find everything
o.k, but this was real. I wanted to
give my Daughter a hug but could see they were both on the verge of tears and
this would have probably tipped them over the edge. Through all of this Natalie
was playing happily with her toys. She
was too young to understand her baby Sister had anything wrong. I wanted to cry but no tears would come, I
was in total shock.
We left to break the news to my other Daughter as I did not
want Emma to have the ordeal of going through it again and they needed to be
left alone, to comfort each other. I
finally cried with Sarah and thought we would not be able to stop. That night I cried myself to sleep. I felt that I was letting Emma down. I was
her Mum and Mums fix things, make them better.
I could not fix this.
The next morning the hurt had turned to anger. How dare someone say my Granddaughter may
not be able to do things, how dare they say she had a bleak future ahead of
her. This was my family. No one is going to write them off.
The telephone rang, it was Sarah, she and her partner
were going out to buy sensory equipment for Jess ‘we will prove them wrong Mum’
she said. I am so proud of my
girls. And so we decided as a family
(which includes Ben’s Mum and Dad and also my Ex husband and his partner) that
we would do everything we could to help Jess in her development and prove the
medical profession wrong.
