It seems no time
at all since August 1971 and the birth of my first daughter. Over the intervening forty-two years there
have been many, many changes. Sadly, it
seems that at least one thing has not changed for the better.
My daughter seemed
healthy at first, but by three weeks old she was crying a lot. Visits to the clinic did not help but
eventually, when she was six weeks old, I managed to get an appointment with a
paediatrician. I had hardly stepped into
the consulting room when the doctor was phoning for an ambulance and my baby and
I were being rushed up the road from Perth to Dundee Royal Infirmary. On arrival I was informed that Sarah has
hydrocephalus and would very soon be prepared for neurosurgery. That was to be the first of many rushed
journeys between Perth and Dundee, and the first of the fifteen neurosurgical
procedures that Sarah would endure over the next three years.
I have forgotten a
lot of the detail of the day-by-day challenges of dealing with Sarah’s various
needs and her uncertain future. Some
things, on the other hand, I remember clearly.
Like the day Sarah was having a four-hour surgery and the phone went two
hours into the operation. My heart
sank. However, it was to let me know the
operation had had to be delayed and was only now beginning. I also remember the day we collected Sarah
from hospital after a long stay and, by way of celebration, we popped into a
cafe on the way home. Because of the
neurosurgery Sarah’s head had been shaved and her hair was not yet growing
back, and her many scars were showing, the latest one very visible. I shall never forget the pointed looks and
mutters of the other folk in the cafe.
Sadly, that sort
of reaction was more commonplace than I had expected. I also found out at top speed that a lot of
people did not want to mix with me or my daughter; perhaps other mothers
thought that hydrocephalus was ‘catching’.
Anyway, I was isolated and, as it was impossible to get a babysitter who
felt able to look after Sarah, my social life and, therefore, contact with
other people was almost non-existent. As
Sarah was vulnerable and unable to stand the rough and tumble, or the occasional
taunts, of children at a regular school, she had to attend special schools
which were often at some distance from our home – so there was no opportunity
for regular school-gate conversations with other parents. Sarah also had regular medical appointments
at various hospitals in London, where we now lived - sometimes as many as one appointment
per week - and these, added to her regular periods of illness, and further
‘review’ surgery from time to time, meant that we were never in a regular
routine.
I am so grateful
to the wonderful medical staff who were able to save Sarah. I am so grateful that there were some caring
professional people who found the occasional medically-qualified babysitter for
me, and so saved my sanity! I am so grateful
to the minister of my local church who gave me huge support, both practically
and spiritually. I had a few fantastic friends
who, even the two or three who lived at some distance, kept in touch with me
regularly. I am grateful to God that He
has always watched over Sarah.
However, all that
being said, it seems that a degree of isolation appears to remain a feature of
life for those parents who have a child with some form of disability. I think you may say that society is different
now. That we are more enlightened. That the Paralympics last year did much to
emphasise the fact that differences can be embraced and celebrated. All this is true. However, sadly, I recognise in my daughter –
the mother of a little boy with Aspergers Syndrome – a similar degree of isolation
to that which I experienced almost half a century ago. Despite having some support from a small
number of good friends, her life is very different and very solitary compared
to the vast majority of her contemporaries.
Unfortunately, not
everything has changed.
