The Difference Makers

‘Of course, you had a meeting to attend this morning at the centre. I take it that it all went well?’ ‘I’m sorry we didn’t talk about your day. And what about the parcel delivery?’ ‘All went as good as can be.’ ‘And yeah, Rachel’s work in Magic Brush is just tip-top. Our customers are happy. We do have a few more orders. But I am behind with every single order.’ ‘This morning I had planned to go back to do the canvas but didn’t.’ With a deep sigh Emily said, ‘So much for my discipline, hey! ‘ ‘I got distracted.’ I was talking to Rachel about this morning meeting.’ ‘I understand if people don’t share my view point. Take Rachel for example – she shows so much love and appreciation but this afternoon she got very upset when I explained that as a mother, I didn’t do the right thing always for Jack.’ Julian gave his wife a puzzled look. ‘It’s something I’m becoming more and more aware of recently.’ ‘Julian, that includes us, though more me than you. It’s clear that the parents want something done. I strongly believe we must change our own thinking, check our belief system.’ ‘It was a good meeting. Painful at times.’ ‘Toward the end of the meeting they asked me about my views and thoughts about the current news.’ ‘They are an inspired bunch of people you know, and I couldn’t help but to share my deepest feelings with them. I even spoke about my sense of guilt for not having done enough for Jack when he was born which I’ve carried with me all this time’. Emily was relieved to see Julian listening to her attentively. She saw a change in his demeanour, which pleased her immensely. He moved from his slouching position to see Emily’s face. ‘Anyway, since the last time we were reminiscing on the day Jack was born, I found myself thinking about it all day afterward. What you said also played on my mind.’ ‘I’ve this one picture and experience that has stayed with me. It was around 4 or 5 o’clock in the afternoon after the doctor had told us that Jack has Down syndrome. I’ve never been sure how to or even know exactly how to express these thoughts and feelings up until now.’ Julian continued, ’All the intellectual stuff I know about life and what have you didn’t make one iota of difference. My recurring thought and uneasiness since that day was that I, Julian Beacon, had done something wrong to his family.’ Holding Julian’s hand, Emily asked ‘And the picture and experience you mentioned just now?’ ‘Oh yeah, I can’t remember what it was I had to fetch from home that day. You were quite sleepy. Jack was by your side in a little crib, he was very quiet, hardly moving. But I could see his little pink fingers, making an odd movement, his eyes were closed but he seemed to be sleeping. I slipped away then.’ ‘It only took me 30 minutes to reach town. I was on the second turning from Crag Bay and for the first time I noticed the signage, ‘Down Syndrome Parents Support Centre’, not far from the corner shop or mini market as you know. A place we’ve passed through practically every week’. ‘What struck me most was as if I was seeing life the way it is for the first time – the place, buildings, the trees, the things around me and people I never saw before’. ‘For some reason wherever I went after leaving the hospital, whether by car or on foot I couldn’t speed up.’ Teary eyes, Julian continued, ‘I moved at a slower pace. More strikingly of all, it was on that same day that I noticed, for the very first time a little girl, probably about 4 or 5 years old with Down syndrome, walking along with his parents towards the park.’ ‘I felt I was conscious about my life, our lives together.’ ‘Like I’ve just woken up. I don’t know.’ ‘What went through your mind then?’ ‘Not sure, I guess very little, other than I’m no longer the person I used to be’. But then in many ways becoming a parent is just that, isn’t it?’ ‘I agree with you that there’s a sense of confusion and loss at first.’ ‘And I wonder whether those feelings would be different had Amy been our first child?’ They both stared at each other, then Julian said, ‘Hey honey, there’s a limit here. We must stop this, we mustn’t even be thinking our lives on those lines. What if this and that?’ ’Although it’s through how we as parents react to the birth of our child is a personal matter; which should not be interpreted as the parents do not love their child. Or as the couple who told us about the adoption option offered to them, because they felt distraught and lost.’ Over the last 5 weeks both Emily and Julian have become more determined that equality in health begins from the time the child is born. In some way, they’re grateful that they got to know of the recent publication. They strongly believe, like many other parents what they’ve come to know is that a new born child with Down syndrome gives us optimum opportunity to cultivate an attitude of inclusiveness and equality. ‘You’re right. But like you, I do have these yukky feelings too.’ ‘But Em, I don’t believe I’m that same person, though. In Julian’s voice Emily could hear a resolute determination that things must change. Emily was pleasantly surprised as she gave a sign of relief and continued to listen attentively. ‘I strongly believe that discriminatory treatment and prejudices have no place in care giving. Parents and siblings have a pivotal role to play in supporting the professionals in valuing and caring for people with learning disabilities.’