It's difficult to describe how we felt at that moment. My husband,
Barry, is an optimist and was quite shocked. I had already sensed something
different about Jo - she seemed unusually floppy and sleepy. So maybe
I found it easier to accept.
All through my pregnancy I had been aware of the "risk". I'm quite
sure God had been preparing me. Somehow Down's Syndrome had kept coming
up on TV, in what I read and in conversations with others. Only a month
before Jo was born I remember explaining to the boys about the chances of me
having a child with Down's Syndrome. I'd said that if that happened we
would just love her and care for her just the same. And that's what we
did.
The hospital gave us a private room. I stayed in for 5 days and worked
at getting Jo to breast feed, whilst medical staff did various tests. Barry
probably had to do the hardest job. He had to explain the situation to
our older children, the elderly grandparents, and other relatives and friends,
only 24 hours after breaking the initial joyful news.
Our elder daughter was old enough to be aware of the implications and was
naturally anxious. She remembers it felt like someone had died. The
sister she was expecting had vanished. In her place was someone she wasn't
prepared for and didn't know how to handle. She wasn't sure what effect
it would have on our family's way of life.
Our younger son says that at the time, he didn't really understand what it
was all about. The elder one felt sad that his sister would have to live
with the disability all her life. The grandparents, too, were concerned
but the whole family accepted and loved Jo and gave us their support.
Barry summed up our feelings in the birth announcement we sent out. It
said, "Although we wouldn't wish Jo to have Down's Syndrome, we are
sure she will bring her own particular blessing to our family."
The gifts and cards flowed in. Some wrote special messages of encouragement,
others just chose to treat her as a "normal" arrival. We decided
early on not to worry about other people's reactions and just accept whatever
they said. We knew ourselves how difficult it was to know the right thing
to say. One of my precious memories is of the headmaster of our local
primary telling us that he would look forward to welcoming her into his school,
just like he had our other three children. He will be doing just that
next September!
A very caring consultant at the hospital gave up his free time to come and
chat to us. His advice was, "Take her home, love her, enjoy her and
nurture her just as you have your other children." Although I felt
I wanted to find out as much as I could about the Syndrome, he was certainly
right – first and foremost Jo is a child, with the same needs as all other children.
When Jo was ten months old, I found Ruth, a wonderful childminder, which
allowed me to do some supply teaching again. Ruth has been an example
of God's provision for Jo and last year she became Jo's Learning Support Assistant
at play school.
What impact has it had on you as a family?
Jo is now nearly 4 She has changed our lives completely. Which changes
are the result of Jo's disability and which would be the same for any family
with older children having a new baby, it's difficult to tell. We've certainly
learnt a lot, as we faced new situations and developed new skills.
We have all made sacrifices. The other children have missed out on
some things because Jo's needs have come first. They have done their fair
share of "Jo-minding" too, especially as she has become more active
and needs constant supervision.
My own "career" (if I had one!) has had to take a back seat once
again too. Although I know some folk manage to work full time, we have
had far too many appointments to let me teach on a regular basis. In some ways,
though, that's a positive thing. If it wasn't for Jo I would probably
be trying to fit far too much in!
The children have learnt to be more accepting of those with disabilities.
My husband admits people with disabilities used to make him feel uncomfortable,
but he too has found that feeling is gradually fading. Our youngest son
hadn't relished the prospect of losing his position as baby of the family, but
he quickly turned into a wonderful caring elder brother, who instinctively did
what was right for Jo.
An unexpected side effect of having Jo is that I have found other people
far more willing to share their own problems with me. I guess that's simply
because they know we have problems too.
When I watch Jo climb on to her 94 year old Grandpa's knee and snuggle up
to him whilst he reads to her, I know that all of us have received from Jo the
best thing any of us can ever experience – unconditional love.
What would you want to say to someone in a similar situation?
It's difficult to generalise because every child with Down's syndrome is
an individual and every family is unique. I can only say that whilst having
a child with Downs Syndrome is different, it's not the end of the world. You
do have to face some difficult challenges and there are low moments -
but there are also many precious ones too. I have learnt so much through
having Jo and have met some brilliant professionals and some amazing parents
and children. We are all certainly richer and, I believe, wiser because
of her.
What would you want other people to understand?
People find it difficult to know how to react sometimes. We have mainly
only had positive reactions but other parents aren't always so lucky. I
know some have hated overhearing remarks like, "What a pity!" or "Look
at the poor little thing, isn't it sad!"
The hardest thing that I have had to deal with was when an expectant mother
told me that she would have an abortion if the tests showed she was expecting
a child with Down's syndrome. Whilst I was glad she felt able to be honest,
it did make me feel she was devaluing Jo's life.
A lot of people tend to make some generalised comments about how people with
Down's syndrome are always very happy – or loving – or musical. The truth
is they are just as varied in character as the rest of the population! I
usually try and gently explain that Jo has her grumpy days - just like her mum!
– and that actually she is very like her elder sister: likes to wake up slowly,
comes alive in the evenings, and loves pieces of paper, pens, books and music!
I fully accepted Jo and her condition when she was born but I'm beginning
to realise there will probably be many moments through her life when I have
to face up to and accept the differences that brings. Jo was born with
very low muscle tone so she has reached all her physical milestones – sitting,
standing, walking – very late. It is tough to see younger children literally
running past her. I read an article recently by a mother who was just coming
to terms with the fact that her twenty-something son will not be able to live
an independent life and start his own family as all her friends' children are
doing. I guess there will be many more "crunch" moments to come
for us, too.
Thankfully, having experienced God's help in the difficulties so far, I can
also give Him my concern about Jo's long-term future. I know that Jo is
completely accepted, loved and valued by God just as she is – just as He accepts
and loves me with my imperfect view of things. He has proved beyond a shadow
of doubt that He understands and has provided for our every need.
Are there any resources you'd like to recommend?
We are very fortunate that the newsletters and publications produced to support
people with Down's Syndrome in the UK are excellent.
The Down's Syndrome Association
deals with everything to do with daily life, health, and benefits
The Down Syndrome Educational Trust
concentrate on developing educational resources for use with children
with Down's Syndrome.
The Makaton Vocabulary Development Project
is another useful site. Makaton is the simplified sign language
developed for people with learning difficulties, which we use with Jo as an
aid to speech development.
Melody is an organisation which has
just been set up to promote music-making for people with learning disabilities.
Article written by Jenny Robinson
Photograph at the top of the page reproduced from the DOWN'S
SYNDROME ASSOCIATION Website (www.downs-syndrome.org.uk), with
permission."