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Williams Syndrome Association of SA
PO Box 19113
Tecoma, 5214
East London, South Africa
 
  
 
 
 
 

 
 

Jake’s story

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

 

 

 
Jake Fine