She
is my daughter and I love her.
Probably like many others mothers to be, I was feeling proud, good,
beautiful and very healthy, but with some worries about the future.
To be pregnant was like a dream come true for me, because I never
thought I would have a baby. Even today sometimes I look at her and
think; it is real, I do have a baby! I was full of dreams and plans
for the baby, who would grow healthy, intelligent, and very successful
of course, hoping that I was expecting a normal baby. I always asked
God to give me a physically, mentally and spiritually healthy baby
who would also believe in Him. Because I believed that God would give
me the right child, as long as it was what I wanted. I thought I deserved
a perfect child.
I
talked to her a lot during the pregnancy and when she kicked me I
cuddled her feet, or what I thought were her feet. Some times during
the night I used to ask her to move because I was worried and not
sure if she was all right.
The day she was due to be born I got up in the morning and could not
feel Victoria moving, I felt there was something wrong.
I thought maybe it was because the day before I spent all day taking
a self portrait of her inside me and got too tired to move to reset
the camera. Worried about her silence and her not moving I asked her
to respond and she didn't. I phoned the hospital and said what was
going on and the nurses told me to wait because they were too busy.
Knowing her very well I decided to go to my GP, he sent me straight
to the hospital. Hoping that everything would be perfect, I had a
plan for the great day including a water birth like the South American
Indians have, but after all that preparation the consultant came and
said my baby's heart was in distress and the baby had to be born immediately
by caesarean section.
Seven minutes later Victoria was looking at me upside down with one
eye open. A thought that came to my mind instantly that her eyes looked
like she had Down's Syndrome but I couldn't think straight anyway
at that time during the operation and dismissed it.
After
we left the operating theatre the midwife who had assisted came and
said that she wanted to have my baby examined by a paediatrician because
she suspected Victoria had Down's Syndrome. A Doctor appeared and
then another and they confirmed they thought she had it.
I
had decided when I got pregnant that if my baby was a girl I would
name her Victoria because it is a simple and strong name and only
a victorious child can survive in this wild world, but when I heard
the news and started to observe that little baby with Down's Syndrome,
and possible heart problems, I was so devastated. I thought so irrationally,
that this baby would never survive, and I will keep this name for
another one because I felt it was not a suitable name for such a weak
baby. I was very disappointed, angry, not thinking straight, I remember
saying to my husband that we could try for another one and I would
have "the test".
When
I started to realise what had happened I got very upset and I couldn't
believe it and thought that God had made a mistake, how could he do
this with me? Probably like many other parents I never thought that
kind of thing could happen to me.
The midwife came and saw me so upset that night, crying uncontrollably,
she asked what happened and I told her and she said she does not look
like she has Down's Syndrome, but if she has, and you do not want
her I want her. "She looks a lovely baby and I am thinking of
adopting a baby with Down's Syndrome because my neighbour has one
who is the must adorable child I've ever seen" she said.
Full of elation, I felt very optimistic that she didn't have it, that
the doctors made a mistake, and I hoped that the blood tests would
prove that.
Richard,
my husband, seemed to accept things and just got on with finding out
about what to do next to help Victoria. He was very positive and encouraged
me. He has tried to learn as much as he can, not only to help his
daughter but also to give support to other new parents who are in
the same situation as we were then, through the
Down's Syndrome Association London Branch.
As
the time passed by in the hospital it was very busy and noisy with
all seventeen babies in the ward crying, except my one, who was very
quiet. Many friends called and some were very optimistic and said,
don't worry she will grow up with our children and some were very
encouraging, they didn't see that to have a child with Down's Syndrome
felt like the end of the world. Some phoned and the first thing they
asked was if I was not offered "the test", but other friends
were more upset than me it seemed. I remember one very good friend
asking how could this happen with you and crying down the phone at
me. "You are so strong, so healthy, so perfect" she said.
Some sent emails saying these are angels in the form of babies, they
are very special, you should thank God for such a gift, but others
said silly things like some of "them" managed to walk and
maybe will even be able to talk. Others never called or sent a card,
presumably they didn't know what to say…
As
the time in hospital went by, still blaming God for his mistake, many
thoughts came into my mind trying to find an answer to my questions,
an explanation to ease my pain and I started to think back to when
I became pregnant. What kind of mistakes had I made to have a daughter
who has Down's Syndrome, what have I done to deserve this? Some times
I felt so guilty because I knew I was in a high-risk category, should
I have had "the test"? However, I could not have let anything
hurt the baby in my womb, which "the test" may have done.
I only wanted to protect her, and now I was feeling like I had committed
a crime. I felt irresponsible for not accepting "the test"
which could determine whether my child had Down's Syndrome.
Amniocentesis is an invasive test that involves inserting a needle
into the womb to extract a fluid sample. It carries a risk of miscarriage
or a physical or mental disorder in the case of a surgical mistake,
and I thought I did not have the right to play Russian Roulette to
stop her giving her contribution to the world and a chance to show
us what she has to offer. As a Christian I believe in life.
Suffering
from shock I was thinking totally irrationally now. I started to think
if it was because I only began to take folic acid after I got pregnant,
or because I had pushed myself too much, just back from Brazil and
working very hard day and night to make sure I would finish my book
before Victoria arrived.
All these questions came to my mind to find an answer.
After
two days I managed to successfully breast-feed her. Holding her very
close to me, face to face - eyes to eyes, I talked to her in Portuguese
and praised her, like I always did during the pregnancy; I am your
Mummy. I carried her with lots of love; I will look after her and
help her to reach all her goals, whatever she wants, because I love
her. She opened her eyes and smiled at me, I fell in love completely
with that little angel. There was no longer any confusion in my mind,
and since then she has always listened to me and given some answer
back in her own way.
Still it is difficult to understand, when people say that children
who have Down's Syndrome are very loving and all the rest of it, that
they want to kill them before they are born? We live in a world where
only the perfect is acceptable, but then I ask what is a perfect baby,
no one knows how he or she will turn out. I think society has changed
its values, so that children have become like goods in the supermarket,
we can choose and put back on the shelves if it is not just right
or if we do not like it, I think it is very sad…
During the thirty six months after Victoria's birth life has not been
the same. Victoria is a unique child who enriches our lives with her
energy and enthusiasm. Living day-to-day teaching the little I know
and helping all I can, I think that my good Lord has now, hopefully,
forgiven me for my doubt and ignorance and for the time wasted on
depression and sadness caused by my confusion in the past. Yet occasionally
tears still wet my face when I think how Victoria would be if she
did not have Down's Syndrome. When that happens her smile is like
a balsam on my painful heart and she has been achieving more than
I expected.
I
am just human, like many others full of weakness, but with an open
heart to learn how to live with was has been given. I am not gifted
enough to understand how an imperfect tree can grow such a beautiful
flower and it become a sweet and delicious fruit. Maybe because she
is my daughter and I love her and would not change her for the world,
I believe Victoria chose her parents and she was right.
©
Maria de Fatima Campos, ARPS, ABPPA 2001
If
you are interested in sponsorship of this project or to publish or
exhibit it please call 0208 883 8638 or email photos@campos-davis.com
Victoria
has her own web site at www.campos-davis.com/victoria.html
where you can see
all the latest things she does.
Things that parents should be aware of;
Diet: Victoria has benefited from a dairy
free diet, but when dairy products must be used then we use goat's
produce. This is because cow's produce has more of an emzine in it
which stimulate the goblet cells to produce mucus and goat's produce
is easier to digest. Some fruit and veg also stimulate the goblet
cells, but some repress the production, such as leeks and onions,
kiwi, lemon etc...
Thyroid test: This should be carried
out once a year by a doctor.
Hearing test: Glue ear (blocked inner
ear) is common with children who have DS so regular hearing tests
are needed.
Dentist: The process of teething starts
about the same time as other children but usualy takes much longer
and seems to be very painful. The upper jaw is less developed and
the number of teeth can vary and be sharp.
Doctor's exams: To make sure that new
doctors have the right approach to people with disabilities, we take
Victoria to the medical student exams at the local hospital every
six months. She enjoys being made a fuss of and the medical students
get a chance to meet a child with DS. The professors think she is
a "star".
If you would like
to know more about Maria's portraits of children, families etc., please
see the
Campos & Davis Photos web site
Maria has examples of her work on display permanently at Fun Yum,
Prior Park, Crouch End, London N8 and Mini Kin childrens hairdressers,
22 Broadway Parade, Crouch End, London N8
Back
to top
