The 6 Stages of Receiving a Down Syndrome Diagnosis


The moment your baby is diagnosed with Down syndrome, the universe injects you straight into your heart with the most powerful drug known to man; let’s call it “Enhancenon.”

In small quantities, this drug causes happiness, joy, euphoria, but an overdose of Enhancenon of this magnitude has some profound side effects on 98 percent of the population. Side effects that might be experienced vary vastly in each individual but can include any or all of the following:

Stage 1: Rage, fear and sadness – in any quantity

These emotions are so enhanced, you might feel like you want the world to swallow you up. You might feel you want the world to swallow your baby up, just to make these feelings go away. You might cry uncontrollably or be furious beyond anything you have ever felt before. You might feel grief – this baby is not what you had planned.

Don’t fight these feelings – they are all side effects of the overdose. They are not your fault and they certainly are not something that you can be expected to control at this time.

Stage 2: Heightened awareness

Suddenly everything you hear is “Down syndrome.” Friends especially will relay stories of knowing or having come across a person with Down syndrome. The diagnosis becomes a hot topic. Your eyes and ears pick up and seek out anything linked to the diagnosis and hawk-like you will see and hear more than you have ever done before.

Our advice at this time – FORGET everything you have ever heard before or any assumptions you are making now. Your perception will be skewed because the overdose is still coursing through your veins.

down syndrome diagnosis the mighty

Stage 3: Thinking you are a fortune teller

You will look to an unknown future and think you know what is coming. You will see and plan a future that you think is waiting for you.

Try and ground yourself at this point. Without this diagnosis, you would be marveling at your baby’s tiny fingers and tiny toes. You would be happily examining nappy contents and laughing at baby farts. Try and pull yourself back into the here-and-now and do these things.

The hallucinogenic qualities of the drug is strong, but resist the temptation to to map a future for yourselves and your baby, which is no more possible now than it might have been without the diagnosis.

Stage 4: The “fix” stage

You might become obsessed with Googling, obsessed with finding ways to help your baby. Drugs, physio, speech and language, portage, tests, vitamins… STOP! Enjoy your baby. You cannot cure Down syndrome and right now, your baby is a baby and needs you.

Deal with the here-and-now. Deal with any proven medical problems, but the rest should be as it would have been without the diagnosis. Cuddles, cuddles and more cuddles. Let your baby lead the way and it will all fall in to place.

down syndrome diagnosis the mighty

Stage 5: Opening doors

As your confidence grows, the drug allows you to step outside your comfort zone and make some connections. Slowly, there might be a little prick of realization coming through the fog: this baby is opening your eyes to something new. It might be frightening, it might be uncomfortable at first, but out there is a whole multinational, multicultural family waiting to embrace you.

Stage 6: Delirious pride

When you have reached this stage, your body has almost metabolised the drug enough to function normally again. You will see your baby smile or sit up or roll or put food in his or her mouth and your heart will burst with pride. The pride will come from so deep inside that it might make you weep.

The pride will be so much more enhanced than if your child hadn’t had the diagnosis. Now the fun bits begin and your eyes will sharpen and you will see your baby! Days will come and go and the diagnosis will not be at the forefront of your mind; your baby will be!

down syndrome diagnosis the mighty

The End

But really, the beginning…

This is the start, the start of your very amazing, wonderful journey together. The day that life overtakes fear, the day that love overtakes presumption. Enjoy it.

Once your body adjusts to the huge levels of Enhancenon, you will look into the eyes of your child and realize that this is the child you always wanted. You will feel much more at peace, much calmer.

The fact of the matter is that, occasionally, Enhancenon will still cause flare-ups of any or all of the original side effects, but for different or altered reasons. As for what Enhancenon is… it is pure, undiluted love.

When you finally adjust to this new life, you will realise how much better it has become – all because of this little, tiny, unexpected diagnosis that means so little in the grand scheme of things. You will end up feeling grateful and realizing that you have so much more love in your life now than you ever did before. Thank the Universe.

down syndrome diagnosis the mighty

This post originally appeared on Future of Down’s.

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