The Problem With My Child’s Down Syndrome

I hate that my son, Rukai, has Down syndrome. With every fiber of my being, I hate it.

There. I said it.

But it’s not why you may think.

In fact his condition, delays in development and challenges are in no way the reason. Because, quite simply, they are not the problem.

I hate that before Rukai was even born, he was labeled. They started straight off with me, anointing me with “high-risk” and “of advanced maternal age.” Our nightmare pregnancy journey then moved to a virtual forest full of paper in the mail telling me where to go and what tests to take, which cold white rooms to wait in. I was patronized and chided and frightened and later assigned “gestational diabetic.” I was a wreck. That “pregnancy glow” was little more than the light reflecting off all my constant tears.

Old. Flawed. Faulty. We will watch you very closely. What about “Congratulations”? What about “First baby, you must be excited”? What about “How are your folks feeling about becoming grandparents?”

I hate that Rukai has Down syndrome because society has positioned disability in such a way that human beings can be so callously disregarded. Devalued.

Rukai hadn’t yet taken a solitary breath, yet he was plastered with “risk, one in 119.” He was “echogenic focus” and “anomalies” and “Here, read this leaflet, take this blood test, let us stick a needle in your belly to determine whether we will have to advise you to end your pregnancy.” There whispering sweet nothings and holding hands with that big old six syllable pointed needle gut invasion, was “risk of miscarriage present but not high enough to matter.”

Beg your pardon? No. Sorry, not sorry. Mattered then, matters now. So glad we declined your prodding. Here, jam this needle in your guts and tell me about it.

Where they saw nothing but flaw, we saw our much-wanted son, clouded by gargantuan fear we didn’t have before they started injecting our lives with it.

“I’m sorry I couldn’t give you better news,” said the sonographer.

Really? Well, I’m sorry you felt that “it could be something, it could be nothing” was so dreadful it needed an apology.

High-risk.

Of advanced maternal age.

Gestational diabetic.

Risk.

One in 119.

Echogenic focus.

Anomalies.

Wait —

Try mother and son.

Try it.

They couldn’t. They didn’t.

Rukai was our baby. Now he is our toddler. I have loved him the same since I saw those two blue lines on a plastic stick and bounded down the stairs to share the blissful news with my husband after years of trying to create him. There is no diminished hope or anticipation. There is no less love and joy than there was for the “typical” baby we had expected on the day. And damn it all, weren’t we fortunate to be steered on to a different road. The one that makes people stop and think of why anyone has any value in any life at all. The one that teaches us patience. And tolerance. The one that reminds us that we must now question everything.

I hate that total strangers take what is special about my son and ruin it with pity.

I hate that society has lessened his value before they even have a chance of knowing him.

I hate that swathes of “professionals” are perennially going to try and write his story for him.

I hate the assumptions. The closed minds. Hate all of it.

These all serve to ignite the fire called “my love” all the way to magma. That love which is fierce, protective, frantic sometimes.

But it remains love. Like any other love, this love is precisely the same. Unwaveringly the same.

When Rukai still lived in the safety of my womb, I couldn’t wait to be free of the intrusion of the naysayers. I envisioned carrying our new son as we strolled straight away from that hospital and left the blackness behind. I was so relieved when the day came for him to be “out here.” And then he was born to a world that tries to shame us for our pride. That has drained us emotionally every second since. From saying damn you, we are proud. Damn you, he is our son. Who are you to judge him in this or any life?

I think not.

Yet we live. We live despite them.

I hate that the day he was born we were subjected to pity and predictions and negativity from pillar to post. Because all we saw from the moment we set eyes on him was our son and his power. Hands in fists. Angry. So small, yet so fierce. I knew then I’d let no one underestimate him.

I hate that in this life I have to be a Tiger Mom, because although I’m extremely well-versed in the art of arguing, I really do genuinely despise conflict.

I hate that people feel sorry for us. If you want to pity me, pity the intrusion we are constantly subjected to. Pity the fact that our joyous birth experience was unceremoniously taken off us and chucked out with the lunch scraps and bloodied bandages. Pity the road our son has to walk with people forever thinking he can’t. Having to prove himself forever that I am. I can. I will.

I hate Rukai’s Down syndrome because too many people refuse to strip it away and see only Rukai.

You don’t know what you’re missing. You don’t know how amazing this child is. You don’t know how lucky we are. How bright this road is. How crystalline the view is before us.

Some people call this road “faith” or “religion.”

We just call it “life with Rukai.”

Follow this journey on Down in Front, Please.

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