New parent
elana...@gmail.com
Being a parent for the first time is a daunting and challenging task.
You are however given 9 months to prepare for this awesome experience,
and prepare i did...
Nothing however could have prepared me for the feeling i felt when the
doctor gave me my baby boy!
Jake had miconium stained liquor and was put into an incubator for his
first 30 hours. The doctors told us that he was very squashed in my
uterus and that because of the infection his features were very
swollen. He had lots of wrinkles, a large mouth and very puffy cheeks
and eyes. We nicknamed him our little Sharpay man.
I was the happiest I'd ever been in my life in the 2 months that
followed and even termed it 'post natal euphoria.' Jake never latched
and i expressed at every feed in order to give him my milk. Little did
i know then that my uncompromising devotion to him and my desire to
give him only the best would set the stage for the future...
In my eyes i had the perfect little boy so i started hating taking him
for medical checks - he wasn't gaining enough weight at one stage, he
was getting a non-responsive hearing test result and then at his 6
week check up, the doctor heard a heart murmur.
In the agonising days and weeks that followed Jake was diagnosed with
narrowing of the aorta and pulmonary arteries (laymans terms), and
ultimately Williams Syndrome.
Raw hollowness is the only way that i can describe the feelings that i
felt during the month. But the support and love from family, friends
and an internet support group has been truely inspiring! I have the
most beautiful blue eyed boy who yes, will need more than most, but
who has and i'm positive will continue to introduce me to a world i
never imagined possible!
Below is a poem that my cousin wrote entitled 'To Denese' (my mom),
but because he actually intend it to be for anyone and everyone, i am
sharing it with you.
With lots of love and positivity,
Elana - Mother to Jake and wife to Darren, in Johannesburg, South
Africa
FOR DENESE
One day as I was walking, I came upon a true child of the Lord
He was alert and in his own world, quite content and never bored
I asked him where he was going, for you, his answer I’ll record
First he told me that he was a blessing, his parents great reward
He said that he has so much to learn, to set his soul and spirit free
For children are golden possessions, to give family joys eternally
He came not only to be taught and obey, but to teach triumphantly
Told me to come play in his garden, try to climb to the top of his
tree
Nothing, he said, will stop the world or keep it from spinning around
Though judgments may be clouded, by perspective, speed and sound
Even to people who try and spoil all your dreams, time must be found
Tell them to roam beside you, so they won’t be left in the background
He said he had chosen his path, and all his companions along the way
That he sees different places, has other friends and many games to
play
And if he finds himself flat on his face, if some plans have gone
astray
He picks himself up and rejoins the race, finding silver linings every
day
For nobody can deny that this is the real story of life, in meaning
and habit
Thus in his heart he cannot understand, he knows that you lose if you
quit
Though you may query reason, it could take years to see why all pieces
fit
So we all have to plan and invest and spend time, in order to gain a
benefit
He said, that throughout time life has been for learning, it is always
the same
We all do similar things, just some rules are different in each
person’s game
This sometimes confuses the players, but there is nobody ever to take
blame
For just as love is so different to us all, what you call things is
only a name
I sensed that he was special in every sphere, and he knew why he was
there
As it was planned very long ago with the utmost diligence, thought and
care
For every action there is a reason, the good Lord knows and answers
prayers
So look out and take note of his happiness, how easy his pleasure is
to share
Brian Sacks 27/28 Aug
2008
keith spittal
Thank you for your mail and the lovely poem!
For the first time today (after Keith told me that I had to read your
letter), I actually took the time to read all the mails that have been sent
to this website.... maybe because I've been nervous or scared... not
knowing, or wanting to know, what the future "might" hold for our little boy
Ethan who is now 4 1/2 and was diagnosed with William's Syndrome shortly
after his second birthday. I think it is always easy for people to say,"do
not compare your child to other children", but let's face it, we are all
human, and comparing is what we tend to do. When Ethan was diagnosed, all we
wanted to know was: 1 what is our child going to be like. 2. what will the
future hold for him, but it seemed as if no one actually new anything about
Williams Syndrome. I must tell you that when his stenoses was picked up by
the cardiaoligist, he looked at Keith and I and said: "Looks like Williams
Syndrome". When we asked him what this meant, we were told that our child
might be mentally retarded, that we must face the facts and deal with it...
all in about a space of 3 minutes... what or who gave this man the right to
say such things about our precious little boy that he has only seen for a
few minutes and who he does not know at all. I think the way we were told,
just made everything so much worse! The internet was our answer and I
suppose I can add our biggest nightmare too. After spending days searching
for information, Keith and I decided to STOP. There was just so much, and I
must add, not many positives... I think the turning point for me was reading
an article that someone wrote about their son Ben. It ends off with... and
we decided to let Ben be Ben. I look at Ethan. In my eyes he is perfect!
He has two brothers, Joshua aged 6 and Daniel aged 3. Yes, he only started
walking at 18 months, he started using full sentences at 4. He still
doesn't eat much, well I can actually list it: cheese, bovril samies, (on
brown bread only, mind you), yoghurt, he loves fishfingers and chicken
nuggets... needless to say that Mc Donald's and KFC have made a mint out of
us. We give him Ensure as a supplement and our wonderfull pediatrician
always says: "he is growing fine, not underfed, so don't stress". He does
not recognise all the colours and shapes yet, but so what! He is happy and
he'll get there in his own time. I noticed that there are questions about
behavioral problems, sleeping problems and night terrors, remember one
thing, these things do not just affect children with Williams Syndrome.
Joshua had night terrors... bad ones. All three our children still come to
us at night at times.
Ethan has been attending a play school since he was 2 and he is loving it.
He has had wonderfull and compasionate teachers and is even building puzzles
on his own. We have a number of schools in Port Elizabeth that caters for
children with special needs, and we are in the process of applying for him
to be placed in Cape Recieff where he would be getting specialised teaching,
physio, speech and occupational therapy on a daily basis. I cannot tell you
how excited I am about this and I know that he will benefit from it
tremendously. I also know that he is now at the right age for it as we have
tried all these therapies a year ago and I felt that it was not really
beneficial at that stage. I know many people would disagree with me and
that allot of emphasis is put on "early intervention", but I think that this
also differs from one child to another. Maybe Ethan has been blessed to have
2 siblings ... what better, than the stimulation he has been getting from
them... constantly! Always wanting to do what they do! The "speech
therapy" from young Daniel, who is always there to correct him.. "not TB,
Ethan, say TV", or the Physio from jumping on the trampoline, kicking a ball
or climbing on the jungle gymn with them, the ocupational tharapy from
sitting and drawing or playing with play dough with his brothers...
I know that there is still a long road ahead of us, not just with Ethan, but
with Joshua and Daniel too. We will face every day, week or month as it
comes. Enjoy all three our boys as much as we can and thank God for
everything they CAN do.
Thinking of all you moms and dads out there.
Aletta Spittal
PS Thanks to Magda and her husband, Margeret Marks, Kevin and all the others
for the chats over the phone.
Magda
It is so nice to see that WS families can support one another, thanks
to Louis for installing this chat opportunity!
Please visit our new web site:
http://www.williams-syndrome.co.za and my new email address:
williams...@sainet.co.za
Look out for all the exciting things which appears on the WSASA's
bullentin board on our website as above.
Magda.
>
> - Show quoted text -
Stephen Naudé
our W/S son age 14, Marco, has given us. Learned so much to everyone around
him about loving, sharing and forgiving!
What a blessing from God.
----- Original Message -----
From: <elana...@gmail.com>
To: "Williams-sa" <willi...@googlegroups.com>
Sent: Sunday, September 28, 2008 9:39 AM
Subject: New parent
Hi
FOR DENESE
I asked him where he was going, for you, his answer I�ll record
First he told me that he was a blessing, his parents great reward
He said that he has so much to learn, to set his soul and spirit free
For children are golden possessions, to give family joys eternally
He came not only to be taught and obey, but to teach triumphantly
Told me to come play in his garden, try to climb to the top of his
tree
Nothing, he said, will stop the world or keep it from spinning around
Though judgments may be clouded, by perspective, speed and sound
Even to people who try and spoil all your dreams, time must be found
Tell them to roam beside you, so they won�t be left in the background
He said he had chosen his path, and all his companions along the way
That he sees different places, has other friends and many games to
play
And if he finds himself flat on his face, if some plans have gone
astray
He picks himself up and rejoins the race, finding silver linings every
day
For nobody can deny that this is the real story of life, in meaning
and habit
Thus in his heart he cannot understand, he knows that you lose if you
quit
Though you may query reason, it could take years to see why all pieces
fit
So we all have to plan and invest and spend time, in order to gain a
benefit
He said, that throughout time life has been for learning, it is always
the same
We all do similar things, just some rules are different in each
person�s game
This sometimes confuses the players, but there is nobody ever to take
blame
For just as love is so different to us all, what you call things is
only a name
I sensed that he was special in every sphere, and he knew why he was
there
As it was planned very long ago with the utmost diligence, thought and
care
For every action there is a reason, the good Lord knows and answers
prayers
So look out and take note of his happiness, how easy his pleasure is
to share
Brian Sacks 27/28 Aug
2008
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Checked by AVG Free Edition.
Version: 7.5.516 / Virus Database: 269.17.2/1187 - Release Date: 12/16/2007
11:36 AM
Elana Fine
I needed the positivity at the moment - Jake needs to start Nursery School next year and its just very challenging :(
Where do you live?
> I asked him where he was going, for you, his answer I’ll record
> First he told me that he was a blessing, his parents great reward
>
> He said that he has so much to learn, to set his soul and spirit free
> For children are golden possessions, to give family joys eternally
> He came not only to be taught and obey, but to teach triumphantly
> Told me to come play in his garden, try to climb to the top of his
> tree
>
> Nothing, he said, will stop the world or keep it from spinning around
> Though judgments may be clouded, by perspective, speed and sound
> Even to people who try and spoil all your dreams, time must be found
> Tell them to roam beside you, so they won’t be left in the background
>
> He said he had chosen his path, and all his companions along the way
> That he sees different places, has other friends and many games to
> play
> And if he finds himself flat on his face, if some plans have gone
> astray
> He picks himself up and rejoins the race, finding silver linings every
> day
>
> For nobody can deny that this is the real story of life, in meaning
> and habit
> Thus in his heart he cannot understand, he knows that you lose if you
> quit
> Though you may query reason, it could take years to see why all pieces
> fit
> So we all have to plan and invest and spend time, in order to gain a
> benefit
>
> He said, that throughout time life has been for learning, it is always
> the same
> We all do similar things, just some rules are different in each
> person’s game
> This sometimes confuses the players, but there is nobody ever to take
> blame
> For just as love is so different to us all, what you call things is
> only a name
>
> I sensed that he was special in every sphere, and he knew why he was
> there
> As it was planned very long ago with the utmost diligence, thought and
> care
> For every action there is a reason, the good Lord knows and answers
> prayers
> So look out and take note of his happiness, how easy his pleasure is
> to share
> Brian Sacks 27/28 Aug
> 2008
> --~--~---------~--~----~------------~-------~--~----~
> You received this message because you are subscribed to the Google Groups "Williams-sa" group.
> To post to this group, send email to willi...@googlegroups.com
> To unsubscribe from this group, send email to williams-sa...@googlegroups.com
> For more options, visit this group at http://groups.google.com/group/williams-sa?hl=en
> -~----------~----~----~----~------~----~------~--~---
>
>
>
>
> --
> Internal Virus Database is out-of-date.
> Checked by AVG Free Edition.
> Version: 7.5.516 / Virus Database: 269.17.2/1187 - Release Date: 12/16/2007 11:36 AM
>
> --
> You received this message because you are subscribed to the Google Groups "Williams-sa" group.
> To post to this group, send email to willi...@googlegroups.com.
> To unsubscribe from this group, send email to williams-sa...@googlegroups.com.
> For more options, visit this group at http://groups.google.com/group/williams-sa?hl=en.
>
Wanita van Zyl
Wow but time flies. Who will we be seeing at the WS weekend in Potch end of
October?
Henry is already counting the days till end October. He was so glad when
September started because it meant the beginning of spring and the next
month is October.
He is also looking forward to seeing all his friends again - especially
Marco and Johan. The other sources of excitement : A promised trip on the
Gautrain, flying to Jo'burg and the expectation of seeing a good
thunderstorm (not the watered down version of thunderstorms we usually get
in the Cape)
Regards
Wanita
----- Original Message -----
From: "Elana Fine" <elana...@gmail.com>
To: <willi...@googlegroups.com>
Sent: Thursday, September 22, 2011 9:06 PM
Subject: Re: New parent
Thanks!
I needed the positivity at the moment - Jake needs to start Nursery School
next year and its just very challenging :(
Where do you live?
> I asked him where he was going, for you, his answer I�ll record
> First he told me that he was a blessing, his parents great reward
>
> He said that he has so much to learn, to set his soul and spirit free
> For children are golden possessions, to give family joys eternally
> He came not only to be taught and obey, but to teach triumphantly
> Told me to come play in his garden, try to climb to the top of his
> tree
>
> Nothing, he said, will stop the world or keep it from spinning around
> Though judgments may be clouded, by perspective, speed and sound
> Even to people who try and spoil all your dreams, time must be found
> Tell them to roam beside you, so they won�t be left in the background
>
> He said he had chosen his path, and all his companions along the way
> That he sees different places, has other friends and many games to
> play
> And if he finds himself flat on his face, if some plans have gone
> astray
> He picks himself up and rejoins the race, finding silver linings every
> day
>
> For nobody can deny that this is the real story of life, in meaning
> and habit
> Thus in his heart he cannot understand, he knows that you lose if you
> quit
> Though you may query reason, it could take years to see why all pieces
> fit
> So we all have to plan and invest and spend time, in order to gain a
> benefit
>
> He said, that throughout time life has been for learning, it is always
> the same
> We all do similar things, just some rules are different in each
> person�s game
--------------------------------------------------------------------------------
No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.914 / Virus Database: 271.1.1/3912 - Release Date: 09/22/11
08:34:00
Stephen Naudé
We stayed in Durbanville in Cape Town when Marco was small. We started at
the age of 3 with home programs at Chere Botha Centre, and he started full
time there at 5 years of age. He did physotherapy, occupational therapy and
all the stimulation we could give him as soon as possible. When he turned 7
he went to grade 0 at Jan Kriel school, tried grade 1 for 2 years, but he
could not cope. He went to Alta du Toit when he turned 9 and started
junior/middle phase, till we moved to Marquard. He went to boarding school
at Lettie Fouche School in Bloemfontein for 2 years, went well in middle
phase, he was happy in school, but we had problems in boarding school with
other boys with extreme behaviour problems. For his emotionel good we took
him out, and he is home-schooled in Marquard by a occupational therapist.
We have accepted that we did as much as we could do for him, and that he
will never pass a normal grade. He can only read short words, and basic
plus/minus sums. Next year we will find him a job where he can work with
his hands, when he turns sixteen. The people in town loves him, and accept
him as he is, loveable, kind, and friendly. He brings lots of joy to all. I
wish you all the strenght and love God can give, they are really a gift.
Kind regards
Lydia Naude
----- Original Message -----
From: "Elana Fine" <elana...@gmail.com>
To: <willi...@googlegroups.com>
Sent: Thursday, September 22, 2011 9:06 PM
Subject: Re: New parent
Thanks!
I needed the positivity at the moment - Jake needs to start Nursery School
next year and its just very challenging :(
Where do you live?
> I asked him where he was going, for you, his answer I�ll record
> First he told me that he was a blessing, his parents great reward
>
> He said that he has so much to learn, to set his soul and spirit free
> For children are golden possessions, to give family joys eternally
> He came not only to be taught and obey, but to teach triumphantly
> Told me to come play in his garden, try to climb to the top of his
> tree
>
> Nothing, he said, will stop the world or keep it from spinning around
> Though judgments may be clouded, by perspective, speed and sound
> Even to people who try and spoil all your dreams, time must be found
> Tell them to roam beside you, so they won�t be left in the background
>
> He said he had chosen his path, and all his companions along the way
> That he sees different places, has other friends and many games to
> play
> And if he finds himself flat on his face, if some plans have gone
> astray
> He picks himself up and rejoins the race, finding silver linings every
> day
>
> For nobody can deny that this is the real story of life, in meaning
> and habit
> Thus in his heart he cannot understand, he knows that you lose if you
> quit
> Though you may query reason, it could take years to see why all pieces
> fit
> So we all have to plan and invest and spend time, in order to gain a
> benefit
>
> He said, that throughout time life has been for learning, it is always
> the same
> We all do similar things, just some rules are different in each
> person�s game
-----
No virus found in this message.
Checked by AVG - www.avg.com
Version: 10.0.1410 / Virus Database: 1520/3911 - Release Date: 09/21/11
Stephen Naudé
Ons sal eers volgende week weet of ons kan gaan na die W/S simposium, os
moet eers hoor of iemand vir ons gaan instaan by die werk. Marco sal dit
ook baie geniet om vir Henry weer te sien.
Groete en mooi dag
Lydia Naude
Hallo everyone!
Regards
Wanita
Thanks!
Where do you live?
--------------------------------------------------------------------------------
-----
No virus found in this message.
Checked by AVG - www.avg.com
Louis Kerswill
To: willi...@googlegroups.com
Sent: Friday, September 23, 2011 9:32 AM
Subject: Re: New parent
Hi Elaine
We stayed in Durbanville in Cape Town when Marco was small. We started at the age of 3 with home programs at Chere Botha Centre, and he started full time there at 5 years of age. He did physotherapy, occupational therapy and all the stimulation we could give him as soon as possible. When he turned 7 he went to grade 0 at Jan Kriel school, tried grade 1 for 2 years, but he could not cope. He went to Alta du Toit when he turned 9 and started junior/middle phase, till we moved to Marquard. He went to boarding school at Lettie Fouche School in Bloemfontein for 2 years, went well in middle phase, he was happy in school, but we had problems in boarding school with other boys with extreme behaviour problems. For his emotionel good we took him out, and he is home-schooled in Marquard by a occupational therapist. We have accepted that we did as much as we could do for him, and that he will never pass a normal grade. He can only read short words, and basic plus/minus sums. Next year we will find him a job where he can work with his hands, when he turns sixteen. The people in town loves him, and accept him as he is, loveable, kind, and friendly. He brings lots of joy to all. I wish you all the strenght and love God can give, they are really a gift.
Kind regards
Lydia Naude
----- Original Message ----- From: "Elana Fine" <elana...@gmail.com>
To: <willi...@googlegroups.com>
Sent: Thursday, September 22, 2011 9:06 PM
Subject: Re: New parent
Thanks!
I needed the positivity at the moment - Jake needs to start Nursery School next year and its just very challenging :(
Where do you live?
> First he told me that he was a blessing, his parents great reward
>
> He said that he has so much to learn, to set his soul and spirit free
> For children are golden possessions, to give family joys eternally
> He came not only to be taught and obey, but to teach triumphantly
> Told me to come play in his garden, try to climb to the top of his
> tree
>
> Nothing, he said, will stop the world or keep it from spinning around
> Though judgments may be clouded, by perspective, speed and sound
> Even to people who try and spoil all your dreams, time must be found
>
> He said he had chosen his path, and all his companions along the way
> That he sees different places, has other friends and many games to
> play
> And if he finds himself flat on his face, if some plans have gone
> astray
> He picks himself up and rejoins the race, finding silver linings every
> day
>
> For nobody can deny that this is the real story of life, in meaning
> and habit
> Thus in his heart he cannot understand, he knows that you lose if you
> quit
> Though you may query reason, it could take years to see why all pieces
> fit
> So we all have to plan and invest and spend time, in order to gain a
> benefit
>
> He said, that throughout time life has been for learning, it is always
> the same
> We all do similar things, just some rules are different in each
> This sometimes confuses the players, but there is nobody ever to take
> blame
> For just as love is so different to us all, what you call things is
> only a name
>
> I sensed that he was special in every sphere, and he knew why he was
> there
> As it was planned very long ago with the utmost diligence, thought and
> care
> For every action there is a reason, the good Lord knows and answers
> prayers
> So look out and take note of his happiness, how easy his pleasure is
> to share
> Brian Sacks 27/28 Aug
> 2008
> --~--~---------~--~----~------------~-------~--~----~
> You received this message because you are subscribed to the Google Groups "Williams-sa" group.
> To post to this group, send email to willi...@googlegroups.com
> For more options, visit this group at http://groups.google.com/group/williams-sa?hl=en
> -~----------~----~----~----~------~----~------~--~---
>
>
>
>
> -- Internal Virus Database is out-of-date.
> Checked by AVG Free Edition.
> Version: 7.5.516 / Virus Database: 269.17.2/1187 - Release Date: 12/16/2007 11:36 AM
>
> -- You received this message because you are subscribed to the Google Groups "Williams-sa" group.
> To post to this group, send email to willi...@googlegroups.com.
> For more options, visit this group at http://groups.google.com/group/williams-sa?hl=en.
>
-- You received this message because you are subscribed to the Google Groups "Williams-sa" group.
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Checked by AVG - www.avg.com
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To post to this group, send email to willi...@googlegroups.com.