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It was September 2006
and we had checked into the hospital in Bangkok late at night
and I was going to be induced. It didn’t happen as they thought
labour had started after being 11 days overdue. We were
receiving text messages asking if we were ok. There was a
military coup happening, but we had bigger things on our minds.
The next morning arrived and still no signs of my little one
wanting to meet us, so the induction started. Giving birth for
me was my biggest fear in life, and I had finally got to the
moment where it was going to happen. I still remember the
second my little boy met my husband and I for the first time. I
just remember thinking, wow, he is beautiful. He looked around
the room intently and didn’t make a sound. He was taken to be
cleaned and the crying started, a heart wrenching cry that was
different to other babies. It was days later when the Dr told
us that she wanted to rule out Cri du Chat (Cat’s Cry Syndrome)
and that we weren’t to worry or research it, just wait for the
results. It was the longest two weeks in my life. I couldn’t
help myself, I had to look it up on the internet. I am afraid
there is a lot of information out there, and the first thing I
read was that most babies die in infancy. I believe now that
this is outdated information. We stayed in hospital for 6 days
as Harvey had related heart defects. He needed monitoring but
was ok.
My mother joined us in
Phuket to help with little Harvey. My husband arrived home
during the day which I thought was unusual. He knelt down and
told me that our son did indeed have Cri du Chat. My fear of
labour paled in comparison, and my new fear had just come true.
I was devasted. I didn’t know what to do. I had so many
thoughts and feelings running through my head. I was mourning
for the child I would never have. I cried all day and night for
a very long time. My mother reassured me that I would look back
on this time and be surprised at how upset I was.
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Having a child with a
disability is both a happy and sad time. I was processing
different thoughts in my head about how Harvey, Lyndon and I
would manage in life. How would my friends accept Harvey? How
would strangers treat him? I have to say though, that I have
been overwhelmed with the amount of support and encouraging
words I have received from my friends and family. Harvey charms
anyone who meets him, strangers included! Harvey has already
taught me valuable lessons in life. The ability to love
unconditionally and how I should accept people for who they are.
It has been a humbling experience. I thought I had his life
mapped out. How arrogant of me. I now realise that the
parenting experience is all about ensuring your child is loved,
cherished and safe. To ensure they can achieve all that they can
in life and to reach their goals, even if these goals
differ from the majority of the population. I am honored to be
Harvey’s mother and I am proud with what he has achieved so far
in life. I initially felt cheated, but now I can see that I am
having a fulfilling experience as a mother and parent, just like
anyone else. I love the feeling of his soft skin, the way he
gazes into your eyes when you are feeding him, the noises he
makes in your ear, and how he is so snuggly when you feed him at
3am. I love how you can light up his life just by looking at
him and how he is comforted by me when upset. Harvey makes me
laugh and smile everyday. He is my angel. He has beaten the
odds with his ability to feed. He is now on solids and gobbles
his food down. He gets quite impatient if you don’t keep it
coming.
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So far Harvey is just
like any other baby, and it is hard not knowing what will happen
in the future. When will his intellectual disability become
apparent? Will he have health problems? Will he ever be able
to tell me he loves me? What will happen when we are gone?
Will he be treated well? Would strangers still approach and say
my son is beautiful if they knew he had a disability?
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Right now I am enjoying
the present and relish the moments that Harvey does something
new. He loves to roll around and explore with his hands and
feet. He smiles with every mouthful of potato. He wakes up
happy and with one smile from him, all your worries melt at that
moment. I am coming to terms with the fact that I have a child
with a disability. Some advice I was given recently was to
never ask why, because you will never get an answer. I have
enjoyed many adventures in life and this is just a new one.
Jo
(Harvey's mother)
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Update March 2009
Harvey is nearly two and a
half and boy has he grown. He is an absolute delight and a joy
to look after. He has been settling himself to sleep for well
over a year now. He eats everything you give him and has a
great appetite. His chewing ability has improved. He gives
himself a drink with a sippy cup and feeds himself morning and
afternoon tea. He is learning to use his spoon and fork. He
can sit up all by himself, and has been commando crawling for a
long time, but the big news is ……..he can now crawl on all
fours! He can also pull himself to standing. In the last two
weeks he has met some major milestones. He can also talk!! I
am so proud of him. He can say ‘mama’ and ‘woof woof’ and baba.
He also uses Makaton sign language and can sign eleven signs.
The only food sign he knows is biscuit, so the day he figured
that one out, he got a biscuit every time he asked for one. You
could imagine how delighted he was to have biscuits for
breakfast!! He knows where all of his body parts are, including
the freckle on his tummy. He loves bathtime, and storytime. He
chooses the story he wants but pulling himself up and reaching
to touch the book. He is quite selective. He will then sit
down and turn the pages and sign all the things he knows. He
makes a great piggy ‘oink’ when he sees a pig.
Harvey understands everything. He is quite creative with the
limited signs he knows. He signed to me the other day that I
had ‘hairy’ ‘eyes’. Hairy eyes I thought? Oh yes, he was
talking about my eyelashes! We are working on ways to assist
his communication as he wants to say so much more but doesn’t
know how.
Harvey’s health is good. We have almost eliminated reflux
through the removal of dairy in his diet. I think that being
upright has helped too. He is getting his eye patched at the
moment, but in true Harvey spirit he copes with it. Harvey has
the sweetest nature and is a happy boy who loves life.
On a
personal note, I feel I have come to terms with Harvey’s
condition. It is a process that you have to let happen and it
takes time. I am sad to say that I am now a single parent, and
I have moved from Thailand to my home town in New Zealand. The
last year has been spent setting up Harvey’s therapies and
specialists. He goes to riding, swimming, music and today he
started childcare.
I
would like to address some of the concerns that I had from my
first submission. I am happy to say that my friends have
accepted Harvey. It is a learning experience for all of us and
Harvey is teaching us so many things. Strangers adore Harvey.
I did worry about this when I first had Harvey’s diagnosis, but
I believe that being open and approachable has really helped.
If you freely discuss Harvey’s condition with people, it breaks
down barriers and puts people at ease. If they see how open and
positive you are, then they often reciprocate and will ask
questions. I have found that when people are more
knowledgeable, it reduces the likelihood of inappropriate
comments. We have met some amazing people. Some of my
questions remain unanswered, but I have learnt to enjoy each day
and understand that the future is the future and nobody really
knows what that holds.
I
also wondered if Harvey would ever say he loved me. My
goodness, even though he doesn’t say the sentence, he says
it in so many ways. Big kisses, and cuddles, when he says
mama, and just the way he gets excited to see me. I am so
proud of Harvey. He is still my angel.
Christmas 2007.
Harvey was the cutest Christmas angel. |
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This was in Thailand. Harvey
having fun doing physio in our pool at home. He was about 1 year
old
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Harvey sitting up to
the table for the first time.
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Harvey's first time horseriding in New
Zealand. Harvey is under two in this photo. |
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13th March
2009
Today Harvey mastered
drinking from a straw. What a star.
Jo
26th June 2009
"Harvey really
loves going to daycare. He has many friends there, but
he has a very special friend called Hakaraia. The photo
is of the two of them waiting for a story at mat-time.
Hakaraia is a really special boy who lights up the room
when he enters it. He makes a big effort to say hello
to his friends and teachers. Harvey thinks Hakaraia is
great and will sign 'more' if he goes away from him.
Hakaraia has the ability to make Harvey laugh when he is
feeling sad. We are so happy that he is in Harvey's
life. Hakaraia shows everyone how to say things in
Makaton and how to communicate with Harvey."
Click
here to send an email to Jo
Please note that all first
emails, except for those in other languages, go to the Co-ordinator of our group and are then
forwarded to the intended family. We have to use this practice
to prevent families from receiving inappropriate email and being
inundated by the constant barrage of Spam emails. If you feel
uncomfortable with your email being read by a third party, keep
your first contact note simple.
After the initial contact is made and received by the parent, we
advise you to exchange emails and continue with private
communication.
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