Emily has Chromosome IQ 42.3 deletion. This was her official diagnosis soon after she was born. The prognosis was that she was unlikely to live to twelve,
but here she is, the hub of the family, at fifteen. Apart from when she went into hospital for a spinal operation in 2011 she has been fine. But a few
weeks ago all that changed.
Em is the centre of our family, everything circulates around her. That is how we function. Em has always been a major part of our everyday life and we are
all used to doing different things for, and with, her but that’s just normal for us.
So it was very frightening when I saw her go into a state of ‘nothing’, that’s the only way I can describe it. It was as if her whole body and mind had
shut down. When she is ill I can communicate with her in some strange, instinctive way and she will let me know what is wrong. I can’t prove this, but from
experience I know it to be true. So I knew at once I needed to get things moving quickly.
Professionals see Em differently, there is almost a presumption that she might not survive an episode like this as her condition is so complex. But for me
there is always a solution to the problem, it just has to be found! So it’s a case of getting the medical team on board and identifying the problem. They
can make her better and so I need to work with them. They have the tools, I don’t, but I do have information and eventually, together, we discover the
cause and they set to work.
It is strange how, for the very first time, I too saw Emily as the doctors see her, vulnerable and hanging on to life by the thinnest of threads. I
wondered, why did I feel like this now? After all, she was older and stronger than before. Then I realised, I had seen my husband die since the last time
Em had been really ill, that made me feel this way. I was vulnerable too and it was very frightening. But the fight was on to get her well again and back
home where she belonged.
I’m sure many of you will be able to identify with the emotions I felt at this time: fear, frustration, depression, anger. This is life when you care for a
seriously sick child. But because they rely entirely upon you you are strong, in spite of how you may feel, and like a bag that is always packed, you are
ready to go! Exhausted mentally and physically you may be but you’ll swing into action and do whatever it takes to get your child well enough to go home.
Our family is made up of: my oldest son, who is 26 and a first response firefighter, which is useful since in an emergency I can contact him and know he
will know exactly what to do; his brother, 21, who has always been by my side in caring for Emily; and their sister, who has a very special bond with Em as
she was born exactly a year after her to the very day. We make a good team.
We live in a large farmhouse, purpose-built so everyone can go everywhere and that has always included Em. The house is filled with noise, music, arguments
and laughter. Just like most homes. It’s nothing special, just normal I suppose. Not that I like that word, who is normal? Em is part of it all and
particularly loves the animals (dogs, cat and horses).
This is always what I wanted for her, to be a part of the family, not allowing her disability to set her apart from it. Of course, everything medical is
there when it is needed and there have been many, many times when we have all had to respond to a crisis. But over the years we have learnt to work
together and you’d be amazed at how responsible your average bolshie teenager can be when faced with a life or death situation!
It is Em – unable to see, speak or do anything for herself – who gives this family its sense of what life is really all about. Our values come from her.
She puts our life in perspective and if she needs something then even a full-blown row stops just long enough for her to be attended to, before starting up
again! She gives us an insight and an awareness of what is important in life. What would we do without her?
After she recovered I recalled my doctor’s kindly meant comment on hearing she was in hospital, ‘You realize this could be the end, don’t you?’
Yes, I did. It is a fact that never leaves me, or any parent who has a child with a limited lifespan. We have to accept it and learn to live with it, but
never for a second does it leave us. It is the reason why every day is precious and time is never taken for granted. It makes a negative become a positive.
How very lucky we are to have our Emily home again where she belongs.
To be continued …