BY MONICA KELLY

I sometimes cry after I talk to people about my daughter Scarlett. Not because she has Down syndrome, but because people are usually looking at me with anything from disbelief, to pity, to even horror as I talk about our daily experiences. These include appointments with medical professionals – paediatricians, ophthalmologists, audiologists, endocrinologists, neurologists – and our concern for the consequences of the medical outcomes on Scarlett’s health and development. Then there are the associated frustrations of the medical “mill”; endless waiting, uncertainty, disorganisation and isolation. Our daily life now involves visits to the children’s hospital, early intervention, thoughtless comments from others and more.

When it comes to Scarlett though, I know that despite the difficulty of some of these experiences, life with her is wonderful. I fear that people don’t understand how this is possible as during Scarlett’s short life, we have been told repeatedly about what is “wrong” with her. I remember reading a story once about a woman who had lost her legs in an accident. She said that her life was better since the accident. I understand this. I feel the same about life with Scarlett.

“As well as the joy of having a daughter, for the first time in my life, I feel I have found a way to understand the concept of living in the moment.”

I have a daughter, a beautiful bundle of joy. Scarlett is warm and snuggly, loves unconditionally and her smile lights up the room. When she does new things, she amazes me with her brilliance. I hear others at times talk about how having children is such hard work; sleepless nights, no thanks, seemingly unending streams of wee, poo and vomit, and all this goes on for years. I see the media play up stories in the context of this “hard work”, about why anyone would choose to have children. For me, there was never anything to weigh up. I have always wanted children. I never took it for granted that I would have them and now that I do, I cannot believe the joy that comes with all the “hard work”.
It’s that feeling you get inside just at the thought of your child, let alone when they smile, hug you, tell you they love you, pick a flower just for you and do a painting or a card with such intensity and passion – all for you.

It was Mother’s Day recently and I was reading in the newspaper articles on motherhood. There was a description of the word joy, though I’ve come to the conclusion that words for me, in this case, don’t capture the intense real-life feelings and emotions, the whole-body experience of joy. I feel all of that for Scarlett, as I do for my other daughter, Grace.
I have been on a journey over the past 16 months; an unexpected journey and, truthfully, at times as an unwilling participant. After Scarlett’s diagnosis of Down syndrome, I felt so many difficult emotions and went through many ordeals as we dealt with the consequences for Scarlett. One instance of incorrect medical intervention meant that Scarlett was overprescribed thyroid medication for the first three months of her life. That was particularly difficult given we had barely even understood at that stage what having Down syndrome meant for Scarlett or for our family.

After a few months of what felt like barely surviving, I was scared. I felt like I had changed fundamentally and I didn’t know who I was any more. In such a short period of time, I had learned things about the world that I didn’t know before – or at the time didn’t want to know – and I responded differently to many everyday situations. My responses shocked me at times and I had no idea, or head space, to even think about how I might best respond to properly represent Scarlett and my feelings of love for her.

“I have always wanted children. I never took it for granted that I would have them and now that I do, I cannot believe the joy that comes with all the ‘hard work’.”

I felt that the greatest challenges we were facing weren’t about Scarlett, per se, but about Down syndrome, in general, about the future and about the place of disability in our society. Sometimes, though, I did find it hard to distinguish between Scarlett and those issues and felt unable to talk about it.

But I have come to realise that there was, and is, a separation. Scarlett is far more than a genetic condition. I know I have a perfect daughter, even though others might not see that. The journey has involved learning about, and feeling, the pain of the children and families before ours who have had to endure far worse; the placement of children into institutions, away from family and without basic nurturing or education. I’m still travelling on the journey and still feel pain at times, but what I’ve found along the way has been truly amazing to me and brought even greater happiness into my life. As well as the joy of having a daughter, for the first time in my life, I feel I have found a way to understand the concept of living in the moment.

Others may see us when we’re in a hospital ward, waiting for neurological tests. They may see a child with a disability, the mother looking tired, having had little sleep and knowing the night ahead, sleeping with eight others in the hospital room, won’t bring much more. But it is in this moment that I see, feel, hear and smell the joy that my beautiful daughter has taught me about. I have stopped, I can see the sun shine and feel the glorious warmth on my face through the window. I look down at my sleeping daughter nestled against me and feel pure joy that we are here together on this earth, that we have the opportunity to feel each other breathing, and feel the love and warmth of each other.

I don’t know how she did it; perhaps it began for me as a way to cope. But rather than think and worry about all the “ifs” and “buts”, the looking ahead and planning for what is essentially the unknown, the concern about what other people think and worrying about all the things I have no control over, I have tried to focus on what I have to do today – it may be as ordinary as getting home, feeding Scarlett and changing her nappy. And sometimes when the days have been tougher, I’ve focused on what I have to do in each hour. But it is then that I have mostly had the space to appreciate what I have here and now. And somewhere in all this, I have found myself again.

Monica Kelly is married to Murray and has worked in health promotion and public health for 20 years, focusing on reducing health inequalities, particularly in Aboriginal communities in the Northern Territory and Victoria. She has recently started some work looking at the health inequalities experienced by people with disabilities. Murray has recently moved from working in a law firm to working in the area of disability sports, so the contribution Scarlett is making to her family’s journey continues. The family lives in Ascot Vale, Victoria.

Author addendum: As time passes, that early lesson of staying in the moment has only proved more meaningful. I feel stronger now. I am thankful every day for the joy that Scarlett brings to my life. And I am now more able to allow others to see that having a child with Down syndrome may not be something to cry about, but rather a blessing in disguise.

This is an extract from Now I See: the Enriching Journey of Raising Children with Down syndrome.

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