Setting the stage to NORMAL…

A few weeks ago, I attended my nephew Juan’s school concert and was blown away while watching him on stage. Knowing I wouldn’t be able to put into words what I had experienced, as eloquently as my sister in law Tria, I asked her to write this post for me.

I don’t think I have mentioned much about Juan’s brain damage on Blairadise, mainly due to my ignorance on his condition. Unbeknownst to my sister in law, during her pregnancy with Juan, she contracted Cytomegalovirus, or the CMG virus which caused profund deafness and substantial brain damage in her tiny unborn baby.

In the beginning, the doctors told them he may never walk or talk, and would never be able to live a “normal” life. That didn’t stop Hennie and Tria from pushing on, learning everything they could about his condition. Flying to America to attend a course on how to be better parents to a child with a disability. Constantly reading up on the latest break throughs in science and physical therapy treatments.

What they as parents, as a family and Juan as a human being have accomplished in three short years is astounding. He’s walking, he’s talking, running, playing, laughing, singing and dancing. All things the doctors said he wouldn’t be able to do, ever.

So here is a short little story that I asked Tria to share with you from their amazing journey…

“What is normal anyhow?” you might ask, “ If you compete in the Paralympics; would that qualify you as being abnormal “? 
When a parent gets the news that their baby is missing one of his senses, has substantial brain damage, and if you are lucky, you are going to end up with an adult with the mental and physical abilities of a toddler, you pretty much sit back and think:  “CRAP ASS!!!—surely this isn’t normal?  “Why could my baby not just be normal? Shouldn’t a human being be issued with a ten toes, ten fingers theory? This is not human. Not humane. This is just not what I signed up for!!!”
Well what, exactly, is it that you signed up for anyhow? We can debate this sideways but one thing is for sure: as with life, having any child is also signing up for the unknown for the rest of your life! And that is exactly what you get: the unknown. 
Last night was Juan’s school concert. When my little deaf boy walked on stage with his little bitty rigid legs in his puffed crocodile costume, with his tiny face popping out of the crocodile costume’s mouth, the whole of humanity just has to sit back and celebrate super-human abilities!  The courage it took for that little man, having not being issued with the “standard” package, to get up there and sing his songs… doing his  little sidesteps. He has risen to the “same” as others born with a “normal” package, he has grappled with, and conquered his deficiencies, he has shown that the bar was not too high for him! That has to stop you in your tracks and say, “Juan, I salute you!”

The most gorgeous crocodile in history!

And that is exactly what his mommy, daddy, grandparents, brother and sister, his nanny and his dearest aunty Blair did; we cried and laughed and just couldn’t believe how far we had all come. In that very moment we realized that he is like us; nothing less, maybe even more.  Whatever he might have been issued with, he has a heart wanting to be loved, a spirit wanting to fight, he has his fears and most importantly, because of all the things that make him UNIQUE, he supremely qualifies as being normal!
For each Paralympics athlete entering the stadium, who got up on stage and performed their thing, we know that to your mommy, your support system, you are normal. With the courage that comes from being human, you went out, vanquished your inadequacies and taught us with much humility, what normal is all about.  We salute you.

Getting ready for the concert and a quick glance at Juan’s “ears”: the Nucleus Cochlear Implant System.

A big head to carry on these shoulders!

Juan in his BIG costume.

Anna, Keira, Tria, Hannu and my mother in law.

Anna, Keira, Tria, Hannu and my mother in law.

Brother in law, Hennie and Juan’s biggest fan, Hannu. Still awake @ 22h00; not missing a thing.

Me, Juan’s second mom: Anna and his biggest fan: his younger brother, Hannu.

NOTE: Juan attends a school, Eduplex, which was specifically built for the hard of hearing. Deaf children are educated alongside those with normal hearing with a benchmark of one deaf child for every five normal hearing children. This naturally sets the stage for the hard of hearing to learn to speak naturally, more easily. We are fortunate enough to have this world-class facility within 10km from our house. Thanks to our support system; Juan is bilaterally implanted with the Nucleus 5 cochlear implants, which enable him, to date, to hear sounds as soft as 25db. Might not be ‘normal’ sound – but it is HIS normal and enables him to communicate freely!  When the world of sound gets too much; Juan has the ‘super-human’ ability of switching off his sound whenever he pleases!

 

I am so lucky to be apart of this amazing family. Their strength encourages me to be a better person and parent. Thank you, Tria for sharing your story and inviting me to Juan’s concert. I didn’t tell you, but I cried all the way home that night, thanking God for all that Juan has accomplished. I am so proud of you guys.

To Juan, I salute everything you are, and everything you will be!

 

 

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6 thoughts on “Setting the stage to NORMAL…

  1. Amazing familie wat deer dit alles net aasgaan en net die beste van alle maak
    Julle maak my trots en is so mooi voorbeeld vir ander

  2. What a moving story of a brave little boy and his strong family! I’m sure you feel very lucky to be in their lives.

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