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  • Writer's pictureSarah Roberts

If only I knew then what I know now

That moment. The moment my life changed… “I’m sorry but we suspect your baby has Down Syndrome”. THAT was the moment I’m talking about. My world, in that instant, changed.

In hindsight not for the worse… If anything for the better. It’s taught me ALOT of things. It’s taught me, that you’ll be ok whatever gets thrown at you. You have to be. It’s taught me not to sweat the small stuff (although must remember this when someone pees me off ;0) It’s taught me an awful lot about the NHS and the medical world. But mainly it’s taught me about love. The love you feel for your baby of course but also the love you feel for your husband… who in times of your despair and heartbreak, has total and utter acceptance of your little baby and puts up with your hysteria. Maybe for one miniscule of a second he might have thought, I didn’t sign up for this, but mostly an ability to not let anything phase him. My Chris.

It wasn’t always refreshing – at first I was so cross with him. How could he be worrying about the borders in the garden, a day after we get discharged from hospital, while our world was falling apart? How could he not be crying? He cried initially but then that was it. Done. He’d cried, now he was just getting on with it. Simple.

Family – My mum and Dad, my rocks. Who allowed me to be 10 again and who held me for hours while I sobbed. At the time it didn’t occur to me but who must have been hurting hard themselves. Mum sat with me for hours. Dad coming late in the evenings to sit with me at hospital so that I wouldn’t be alone. I will never forget that. Mum said to me it took her until Christmas to come to terms with it all (6 months later). She said, a major factor for her, was that as MY mum, there was absolutely nothing she could do, to fix it all. Her little girl was hurting and she couldn’t make it better. She found that really hard and something I was completely oblivious too. Selfish of me not to realise, that our whole family were really grieving too in their different ways.

My sisters and their husbands – both so different in their approach but just kept me alive with their love for both Oscar and me, and who, from the start loved him more than I could have ever hoped for.

The inlaws – I felt i’d let everyone down. Especially my in laws. I knew my family would be accepting of me and what i thought at that point were my flaws. Oscar a flaw. Never. What a ridiculous thing to think (but I wasn’t thinking straight) but Chris’ family? Would they accept him and forgive me? I will always remember Janis, my mother inlaw, engulfing me in the tightest hug. She’d never hugged me that tightly. She told me her new grandson was perfect and that I hadn’t let anyone down at all. John, my father in law.Very quiet initially, taking it all in but who even now tells me constantly, that everything will be ok. Chris’ brother, his wife and Chris’ sister – always there. A constant in Oscar's life and who just adore him.

Friends – The outpouring of love and support from them at that stage was incredible. They felt blessed to have Oscar from the start and excited to be part of his life.

The moment she uttered the words. “Your son is showing signs of facial dysmorphia” (dysmorphia? He’s beautiful). “We had a paediatrician look him over after the birth and he was quite floppy. This, combined with a few other indicators, mean that, I’m sorry, we suspect your baby has Down syndrome. But it’s late (2am) so we’ll come back at 6am and run some more tests”… THAT moment! BAM!

I remember reading an article 2 days after we had brought Oscar home. It was written by a father of a two year old boy who has DS. He wrote of how he felt the day his son was born – This article, literally could not have been better timed.

He wrote ; You weren’t expecting it, you think your lifes over. You wish for terrible things ; you pray for your newborn baby to die. People say that this is all ok to feel. You must lean on the people that love you but don’t listen too closely to what they’re saying, only you will know how you feel. The article talked about how his perception has changed and that his or your life’s not over at all. He talked of all the things he knows now, that he’d wished he’d known then.

You’re going to love this child. It won’t be an effort. It won’t be out of pity. You’ll REALLY love them. On an enormous mountains and ocean scale. It will overwhelm you.

The future is your enemy, the present is your friend. Nothing is as bad in the moment as it was in anticipation and often it’s not bad at all. In fact, nearly all of it is good. (What is it Chris always says… Fear is only your mind anticipating something, that hasn’t actually happened)

Other people are idiots –They will say things you can’t quite believe. Well meaning things but often ignorant, thoughtless and breezily prejudiced. I’m not so sure it is ignorance, more a lack of education and understanding.

They talk of people with Down Syndrome as always being so happy, so tactile, life and soul types who love to join in. People with DS differ massively. Sure some do, but equally some are just as miserable as the next person.

So don’t think your life has taken a horrific wrong turn and diverged forever from the path you wanted to take. It’s still the same path. Being Oscars mummy will still involve all the same joys as parenting any other child, just an export strength. And what’s the harm in that? Whose deathbed wish was to have lived a life of slightly lower intensity?

You’re going to meet some amazing people. They aren’t saints, they’re just supreme examples of normal humanity who feel drawn to work with children like your baby. You would never have met them if it weren’t for Oscar. You will find him a magnet for wonderful devoted souls. It will be your privilege to know them and profoundly beneficial to you to feel so much gratitude. Most people don’t get to experience that.

Other people who you should give a wide berth. The people wallowing in their own self pity. The parents of children with DS who say “My husband thinks Josh is the best thing to ever happen to him… I think it’s the worst” Or the people that make it their lives calling to become dysfunctionally over committed servants of their condition.

Trust your instincts about whose company will have a positive effect on you and your family. Cherry pick the life-enhancing friendships for a while and let the others lie shallow for a while and until you’re ready.

Negatives over – Prepare to burst with pride.You have a child that will probably not best his contemporaries in most competitive endeavours. Many people will not find him attractive… although again, they’re idiots. You’re not going to believe how beautiful he is. And while all your friends babies will zoom past him on the developmental milestones, your boy will lag farther and farther behind. If that sounds depressing, it won’t be. You’ll be as proud of him the first time he does something new as if he’d won a nobel prize.

So dry your eyes. You will be a good mother to this boy, have no fear. Set aside your own feelings of loss and lift your gaze. While your love for Oscar is still gathering pace, use the time to notice how readily everyone else adores him. The nurses in hospital, your family, your friends, even some strangers ; they all respond to him in a way you’re right to envy – with unconditional instinctive devotion.

But give it time. When your love for this boy comes on stream in all it’s might, it will make you the happiest you’ve ever been.

Tom Bickerby writes for THE TIMES NEWSPAPER (16th July 2012)… a piece of writing that at that time, literally picked me up out of my hole.

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