My brother took this picture. He called it ‘and the fog rolled back’. Ten days ago, Pete, Smiling Flower and I, attended the first ever UK CHARGE conference. We drove there feeling nervous and tired. We drove home feeling challenged, equipped, fired up, reassured, emotional, amazed at those we met… and more tired! Overall, for me, it felt like some of the fog that has surrounded CHARGE rolled back.
There had been a day for professionals before we arrived. One of the speakers told us what the professionals had said about our children: they are bossy, determined, unique, funny, sleepless, stubborn and inventive in making the world work for them… Apparently, children with CHARGE have similar personality characteristics and the observations of the British professionals reflect the CHARGE behavioural phenotype.
As she talked, I sat in my seat, breathed out and relaxed. They were describing smiling flower. We belonged here.
There were over 60 children at the conference. Each one we met and talked to was unique. No two children had a similar presentation. Some had very severe difficulties, some functioned very highly, but they were all sparky. I had been worried that we wouldn’t fit in as I was aware before attending that smiling flower had less physical problems than some of the kids. But the whole atmosphere was of acceptance, inclusivity, and encouragement to see the potential in every child.
A particularly helpful seminar was by Timothy Hartshorne, a lecturer in psychology at Michigan University who has a son with severe CHARGE syndrome. He talked about the experience of being a parent and gave me permission to feel all the stuff I push down trying not to feel. My favourite phrases: ‘normal is a setting on a washing machine’ and ‘courage is not denial but can look like denial to other people.’ He said it would help to live this as a marathon because we wouldn’t last if we tried to sprint this race, that the biggest thing we could give smiling flower was encouragement. He was very understanding, tender and compassionate. A great role model.
I found myself reflecting on the phrase ‘you can choose your friends but not your family’. At the conference I felt I had met my CHARGE family. I didn’t choose for CHARGE to be in my life. I wish Smiling flower didn’t have to overcome its complexities. But the CHARGE family I met were inspirational and I am very grateful to have met a group of people who will instinctively understand and walk this road with us.