Being a parent of a child with Down syndrome is such a journey. I feel so blessed to have come in contact with so many wonderful people in my travels over the past four years, and I am honoured that one of those wonderful women, Etelka, could share part of her journey here with us. Thank you x
Then ~ 7th Feb 2011
I am going in for my third weekly check on my baby’s wellbeing and to see how much fluid he has around him. The lady performing the ultrasound is telling me if his fluid levels are still borderline this will be my last scan and I can have my c-section booked in when I see my midwife at the hospital next week. The baby we have called Harry is breech – one foot in pike, one foot below – so no way known is he coming out the ‘usual’ way. The lady stops talking. She turns the machine off and tells me my baby is coming today. The only question is whether I will have him at Monash Clayton or if I will be allowed to drive to Casey Hospital.
Now ~ Today
I saw my brother, sister in law and beautiful nephew today. I mention to my brother that I’m a little concerned because Harry is exhibiting some things that are a little worrying (some ticks, repeating the same phrase). My brother says my nephew does the same thing. I think the penny drops when I point out there is 3 years age difference between Harry and his cousin. For those who love him, Harry is simply Harry. However, occasionally the extra chromosome needs to be factored in.
Then ~ 7th Feb 2011
I am at Casey hospital, getting prepped for surgery. My husband is in another room getting his gown on, and I am about to receive a spinal block. I am excited and, while the anaesthesiologist is trying to make light conversation, it is clear something is brewing in the air. The team assembles, the c section begins. The one thing that gets to me is that it’s so very, very quiet. The obstetrician gives a quiet instruction; I manage to make out something along the lines of “we need to make the cut bigger” and then the pulling and tugging at my tummy resumes. My baby boy is lifted from my body, and the quiet continues. Doctors surround him, I keep asking if he’s ok, but all I get in response is silence. I look to my husband to see if he can see anything; but he just keeps looking at me, trying to reassure me when he has no reassurance to offer. Why is it so quiet? Aren’t babies meant to cry as soon as they’re born? After an eternity there is the tiniest little squawk from the direction of my boy. A little while later there is another. I start to breathe. And cry. The silence in the room continues.
Now ~ 19th September 2015
We decided to drive to Sydney on the spur of the moment yesterday. We hop on the ferry, making our way across to Taronga Zoo, so Harry can see the elephants. He LOVES all animals but is especially fascinated by elephants at the moment. He’s being carried on Paul’s back and he is so excited he can barely contain himself. He spends the entire boat ride chatting wildly about dolphins and elephants and monkeys and tigers. We arrive at the enclosure just as the big male elephant saunters out from his shelter. Harry immediately lets out the biggest “WOW” and we spend the next 15 minutes just talking about this majestic animal. Harry decides it’s hairy and ugly. But he adores it and before we head back to the hotel we are forced to come back and say “bye bye elephant!” He’s just gone through a massive developmental leap in the last few days – his confidence has skyrocketed, his speech has exploded into a million new phrases, and he is finally getting past the toddler food fussiness. My little boy, who was yanked into this world in utter silence is now an explosion of life, vitality and overflowing energy. My heart responds by filling with so much love that I think I must burst on the spot – my body doesn’t have enough space in it to contain this amount of pride, joy and fierce, uncompromising love.
Then ~ 8th February 2011
Seeing as Harry arrived three weeks ahead of schedule, I sent hubby off to work to tie up a few loose ends before he takes the following two weeks off to help me recover. Around 10am a bunch of doctors pile into the room and ask to see Harry. I figure this is a routine check; they all crowd around him, strip him down and my little boy starts to scream. They stand there around him for a few minutes, and after they hand him back to me one of the doctors turns to me and says simply “he’s being tested for genetic abnormalities”. I look at her confused – we were given a chance of 1 in 2157 for Down syndrome and much smaller odds for the other two trisomies, so I am simply not comprehending what she’s telling me. I ask her numbly – “Down syndrome?” She says yes. They leave. I look around the empty room, pick up the phone, call my husband to come back. My world shatters.
Now ~ 22nd September 2015
It’s my mum’s birthday today. She comes over to spend a little time with her grandkids. She and Harry have the most beautiful connection. She is his favourite person in the universe and when mum has hard days he gives her a big Harry hug, takes her into the back yard and gives her flowers. She always leaves happy. Harry is starting to respond in Hungarian to her. He has stopped looking surprised when I speak in Hungarian to him, he now very much enjoys it and we regularly recite poems and read books. He loves books, he loves language, he loves all things colourful and nature oriented. When his grandma walks in the door the first thing he does is run up excitedly, bursting with energy, throws his arms, legs, entire body around her and wishes her a “birthday” – he forgot to say “happy” but I know she got the picture.
Our world is so full of life and noise and hope – so far from the silence that came in the first 24 hours of his life. We have challenges and Harry works harder than anyone I know to achieve things we typical individuals take for granted each and every day. However, his real talent is what he has to teach. He has taught me humility, acceptance of all individuals, the meaning of grace and, most importantly, he has shown me what love truly is.
Etelka is an accountant who was made into a mum by the arrival of Harry in 2011. She is now a wannabe mummy blogger, business woman, movement and health fanatic (reformed fitness fanatic) and hippy at heart who adores her two kids and hubby. They love spur of the moment adventures and anything that elicits a giggle.