For a time Jess attended a private nursery with Natalie
whilst Emma continued with her part- time job as swimming teacher and assessor
for Water Babies, a company that teaches babies water skills from birth. This is a job she loves and she is
passionate about the importance of teaching babies and young children to
swim. We all felt that it was important
for her to carry on with this. I was
working for a busy estate agents, but helped out on my day off and Nanny Joan
helped out on other days. The nursery
were brilliant with Jess. The staff
loved her and had even trained how to tube feed her. Unfortunately it was obvious that Jess was going to need care on
a more ‘one to one’ basis if her development was to improve. She was now gaining weight due to the NG
tube and the high calorie milk being given.
Because of the MRI results doctors were now finally taking Emma &
Ben seriously and various things were now in place such as physio, Portage
etc. Natalie was also due to leave
nursery to start school. Problem was who
was going to look after Jessica if Emma was to maintain her role in Water
Babies. The solution seemed clear to
me. Obviously I needed to talk it
through with Hubby first due to money implications etc, but he was brilliant
and backed me all the way and we made various alterations to our finances. So end of September I said goodbye to my
colleagues and friends at work and began my new role as Jessica’s carer.
The benefits of all the physio and one to one interaction
paid off. At around 14 months Jess
could finally sit up unaided. We attend
a ‘school for parents’ one afternoon a week at a special nursery which she will
eventually go to pre-school. They are
brilliant people there, never looking at what a child cannot do, but always
working on what they can. The first time Emma & I took Jess we were so
overcome by emotion it was very difficult.
Seeing other children with varying degrees of disabilities, some unable
to speak, some unable to walk, was hard.
My first thoughts were- is this how Jess is going to be, surely not, she
does not belong here, she is coming on, she will be o.k. I was just fooling myself. As the weeks went by I realised that this
was a place of love and kindness, we were so lucky that Jess was able to come
here. I no longer look at the other
children with pity, I see them for what they are lovely, happy children. They gave us a standing frame which helps
build strength into her legs. She loves it.
When Emma first saw her standing in it she said ‘oh Mum – she looks like
a proper little girl’. I knew what she
meant.
I am a member of a support Group SWAN uk (Syndrome Without A
Name) and love being able to chat and comment with parents of other SWANS and I
know that Emma has found a lot of support from the group. I would never have believed that one day I
would be a member of a Facebook group with my eldest Daughter!
Over the months Jessica has gone from being the baby that
just existed in a world of her own to a happy, smiling little girl. She babbles happily and is quite
mischievous, especially when it comes to pulling out her N.G. tube!
So it’s not always been a bed of roses. Emma & Ben have had to fight the system
for everything, but we are a family of fighters. I once said during one of my more prophetic moments that we were
all links that could join together to form a strong chain and it is true. We will never give up.
And how do I feel now? Well to be honest, I cannot remember
a time when I felt so happy and life felt so rewarding. Being able to care for Jess and feel useful
to my family has given me a contentment that I thought I had lost. I love being a Mum, I love being a Nanny and
I love to see Jessica’s smiling face when I walk into the room. I love to see her gradually achieve the
things we never thought possible. I
feel so privileged to be able to be a part of this. I love it when Natalie comes home from school and starts telling
me about her day. She is so good with
Jessica and Jessica adores her.
People seem surprised when they ask how I am and I say
couldn’t be better, life is good. I
think they expect me to be sad, even bitter that something like this could
happen to my family. Yes, if I could
wave a magic wand of course I would want Jess to be free of her disabilities,
life will be tough at times but we will face that together. Emma and Ben have two wonderful daughters
and consequently we have two wonderful granddaughters but the love they both
get is equal. We love Jess for who she
is and as she is, no more-no less and Natalie for exactly the same reasons.
Just like I love my girls. I never try
to analyse why this may have happened to us, it does not matter, we have so
much to be thankful for.
So, if you were looking for a sob story sorry to
disappoint. You will not find me
wallowing in self-pity or bitterness.
Jessica – in the words of the song ‘every little thing you do is magic’
and I am so lucky to be part of that magic.
At the age of 56 I am learning new skills all the time, I am meeting new
people, making new friends and realising with some shame that what I thought I
knew about people with disabilities and the hurdles they face was infact very
little.
I am on a mission to raise as much awareness as possible,
especially to help re-educate the medical profession when it comes to listening
to parents – do not be in such a hurry to dismiss them as being over anxious – they may have a SWAN.
