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Beth talks about the beginning of her journey with Molly. This is a BLENNZ
Family story. So I had a baby with a chromosome disorder and discovered when she was about
two days old that he might be blind and at that stage we had no idea. So we had to have
her eyes scanned and we discovered that in one of her eyes she was probably definitely
going to be blind but we didn't know about the other. And it was very much going to be
a waiting game and we had to wait probably about three months before we had a good idea
of how much she could see. And because she didn't smile until she was about three months
old, so when we caught a glimpse of her first smile that was heart breaking and was a huge
relief for Nick and I. So that was a really happy moment and is something that will stay
with us forever. It was very hard for us to know where to start. We were given Molly's
chromosome disorder name and that meant nothing to us. So we were given the name of a geneticist
and the geneticist came to visit us in hospital and told us that he would need to take some
blood tests from Nick and I and try and identify how Molly was born with a chromosome disorder
and what that was going to mean for Molly. At that stage he couldn't tell us anything
so again it was a waiting game. We had to wait for the test results to come back so
that the geneticist could understand about Molly's chromosome make-up. And he couldn't
really give us much more information apart from the fact that she was missing a deletion
in the long arm of Chromosome 7, which meant nothing to us. So yeah, going back it was
really frustrating. I spent a long time on the internet, putting on all sorts of different
numbers, names of chromosome disorders, and it was a mind field. It was just mind boggling.
I spent so many hours in those first three months. And it was really frightening as there
were so many other behavioral issues coming up and disabilities that were associated with
Molly's deletion and it was terrifying, we just didn't know what the future was going
to hold. And eventually we stopped looking on the internet and decided just to see how
she grew and watch her development. And we were very, very lucky because we were put
in touch with a counsellor from the Foundation of the Blind in Scotland and she hooked me
up with a nursery through the Foundation of the Blind, so there were other mums and other
children with disabilities, not exactly the same as Molly but similar to. It was a lovely
environment for me to express my feelings and be around a group of people who understood
where I was coming from. It was too hard to be able to talk about with people initially.
I didn't know how to react to it myself initially let alone talk to anyone else. Nick and I
struggled to communicate our feelings to each other because we were both trying to come
to grasp with our situation. And I had just had a baby and it wasn't what I was expecting
and I thought that it was going to be different. I thought I was going to have a healthy baby
and I thought we'd all be home after a day and it wasn't like that at all so I didn't
know how to deal with it. So in terms of being able to talk to other people, I could speak
to my parents but I couldn't talk to anybody else. It was even very hard to talk to my
siblings about what had happened because I just couldn't grasp the scale of it. I didn't
know myself what was happening and I felt i couldn't answer any questions for anybody
else. And I guess I was also protecting myself and protecting Nick and wanting to shelter
ourselves from the world to be able to deal with what was happening. I can't remember
a specific day or time when I realized I had come to grips with things and understand where
Molly is. She is changing all the time, but I have certainly managed to find some reassurance,
I guess, when she reaches a milestone, seeing her make developments. Each time that happens
it gives me more strength and hope. And my love continues to grow for her no matter what,
but there are moments when her progress might seem to go backwards or she might display
a behavior that I might never have seen before and that can trigger off an alarm bell inside
of me and I can start to panic a little bit and worry and think, "What does this mean,
do I need to do anything about this, is this going to continue?" or is this just a typical
thing that a child does at this stage. So yeah, I try to take each day as it comes.
It's been hard to learn and it's taking me a long time to learn that I guess. And I just
have to remind my self that I can only do that. I can't look further down the road at
the moment and just enjoy where she is now and ensure that she has the support that she
needs right now to continue developing. Many thanks to Beth and her family. You can find
more ideas information and stories at www.blennz.school.nz}