parents

To the Australian couple who abandoned their son with Down syndrome.

Kat’s son, Parker.

By KAT ABIANAC

I went to bed last night in July, and by the the time I woke up this morning in August, 7,500 people worldwide had shared a blog I wrote about my son Parker.

Something else happened this morning, as well. Thousands of people shared a Sydney Morning Herald article about baby Gammy, who was abandoned in Thailand with no biological family, after his parents requested the surrogate mother abort him (risking his twin’s life) at 4 months gestation.

I wonder what would have happened if those two parents had been exposed to a true picture of Down syndrome, or living with children with a range of disabilities. A majority of disabilities are not congenital- they are acquired. Having any child is a lifelong gamble.

Down syndrome is not a life sentence. But guilt and regret is.

And today my thoughts are with those two parents reading the paper, and the internet, and holding their ‘typical’ twin daughter, and wondering what could have been, if they knew then what they know now.

What do I know now?

When a special needs parent says to you, ‘this child is the best thing that ever happened to me’, don’t doubt them. Don’t try and break down reasons for it. Just know it is the truth, and even if they never verbalize their reasons to you, or themselves, it will remain a fact. This is living.

Creating an opportunity to be a more empathetic, understanding and driven version of myself would not have been possible in this way without my son.

There is no ‘normal’ or ‘typical’ any more.

And there is no part of my life I was more grateful to give up.

Here are the words I wrote in that viral blog, after one challenging day in the life of my son Parker.

_________

I knew him as ‘Parker’ since he was 18 weeks old in utero and I found out I had a son. I didn’t know about his surprise.. he would keep that extra chromosome a sweetly wrapped up little secret until he was 1 hour old and I’d already fallen in love with his perfection. Even in utero I loved every kick I barely felt, and when they tapered off in the last trimester every little movement was treasured as they were few and far between.

Little Parker when he was younger.

I had so many hopes and dreams for the son I wanted for so many years. To have him over with his teenage friends so I could cook up a storm for them, cuddles and love so different from a daughter. Taking out the trash without asking. Remembering my birthday. Cuddling me even when he was a grownup, because that’s what a good son does.

When ‘my son Parker’ turned into ‘my son Parker with Down syndrome’ it was overwhelming. My mental fantasies of the perfect child changed to nightmares of a bedridden, ill child who had serious health issues and couldn’t speak or interact with me. I knew no better at the time.

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Reality set in, and my fears were broken down one by one with research and reconstructed with an accurate picture. Still a little overwhelming, parenthood always is. But doable. I could do this! I could be the special needs mum. All of the appointments, the advocating, therapy, hunting, researching, looking for more all the time, booking activities.

I was that mum, like all of us, trying to be perfect and do it all, and I looked at my son daily and loved him and waited for each new milestone, however tiny, with bated breath. Like any parent.

I looked at him and I would see is almond eyes needing a behavioural optometrist, and his lowset tiny perfect ears, and posture, and crawling gait, and my newly trained mind would assess the next therapy need and order of priority I could afford specialists in. Thyroid? What the hell is Reverse T3? Are the studies into human growth hormone relevant? Testosterone treatments? TML? Blood tests for leukemia? Orchidopexies. Adenoids. Obstructive apnea, central apnea, heart defects, laryngomalacia, tracheomalacia, Alzheimers, oxygen tanks, stickers for oxygen cannulas only sold in America. CPAP. Oh, this is the tiniest, tiniest sliver of a fraction of what exists in my google search history. I researched all of it. Some relevant, some not.

Parker and Kat

Then I slowly stopped looking at my son and seeing Parker with Down syndrome. I started seeing a little shining personality between those two perfect little ears. I saw him wiggle and dance and cry and tantrum and say ‘mum’, and ‘no’ to EVERYTHING, and laugh at his sister, and I realised that Parker is Parker. That is all. No matter what I research, he won’t change. His needs are the same and I can take a day off and the world won’t stop spinning and his medical team won’t drop off the face of the planet.

It’s one thing to always tell the world to treat your son like a person first.

It’s another to take a deep, deep breath tonight, sit on the floor, and play. Just for the sake of it, and because that’s what you do when you have a divine little 18 month old toddler who wants all of your attention, all of the time.

Not for gross motor, fine motor, vision therapy, integrating different sensory activities, but just hand him a toy and watch. Stroke his hair and read him a book and tell him he’s doing great. Dance to his favourite song, and know he’s loving it for the tunes and not for the vestibular stimulation.

Then I cuddled him tonight, and gave him a bedtime bottle, and put him in bed. Because we have surgery at the Mater tomorrow, and it’s a big day. <3

Kat Abianac is a single mama of two, a public servant, a passionate advocate in the disabilities community, and writes a blog to educate the public daily on what life is like raising her son Parker, who has Down syndrome. You can follow her at www.facebook.com/parkersplaceaustralia.

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