Portal de Periódicos da CAPES

Evie

2018; Wiley; Volume: 54; Issue: 2 Linguagem: Inglês

10.1111/jpc.13840

1440-1754

Rachel Callander,

Cleft Lip and Palate Research

On 30 March 2008, Evie Amore Callander was born. As new parents, we were overwhelmed with love, excitement and wonder at this tiny life we had the responsibility of caring for. Evie did not latch and had a very small mouth and when we fed her by syringe, she choked, stopped breathing and was rushed upstairs to NICU. We did not see our daughter or hear about her progress until the next morning when our midwife and a paediatrician came to see us. They told us that overnight, some tests had been done on Evie, that she was still up in the NICU and that they had some serious concerns about her. We were told that Evie had dysmorphic features, skeletal anomalies, congenital defects and multiple ventricular septal defects. I had never heard these words before. After a few weeks in the NICU, and even more tests, including genetics testing on Evie, myself and her father, Evie was diagnosed as having an unbalanced chromosomal translocation-partial trisomy 9 and partial monosomy 6, triggered by my own balanced translocation, which I was completely unaware of until this point. They told us that this condition was incredibly rare, they had never encountered it before and it was likely Evie would not live very long at all, and if she did, she would have severe mental retardation, failure to thrive and that these conditions were incompatible with life. They told us to prepare ourselves to say goodbye to our daughter. Everything we were expecting, our dreams and future thoughts as a family had just come crashing down around us and we were in a state of utter emotional chaos. Over time (as Evie did grow), we started to realise that she responded to particular environments which made us think she was experiencing them differently to other people. For example, on a section of road that we drove on often, there is a number of large electrical pylons, and we noticed as we drove under them, she would cry, every time, day or night. Then we noticed this was happening anywhere there were electric sliding doors. It was as if she had an electro-magnetic sensitivity that was unique to her. We started saying she had super powers as a light-hearted way to describe this particular phenomenon; she reminded me of Magneto from X-Men. I then realised, that her entire character and the things she was teaching us and those around her, were very profound. She had incredible strength and bravery, she expressed happiness with her entire body, she evoked a depth of love and care in people they had not experienced before. Her fragility and pure joy, disarmed people and drew them in (Fig. 1). Even how she got around was different, she scooted on the floor on her back. These things made her unique, distinctly Evie and we referred to them all as her Super powers. By now, they were no longer light-hearted words, but incredibly real. Super powers became a positive way for us to describe Evie when we were constantly faced with the ‘what's wrong with her’ questions and the hard medical realities of her condition. Our ‘Super power’ mentality helped balance the deficit language often reached for when describing disability. This helped bring out Evie's best and encouraged others to see her as a person, rather than a collection of failing body parts. At one point, we were asked to fill out a needs assessment form by some of Evie's specialists. At the time, being exhausted and so used to medical stuff surrounding us, this form broke me. I could not tick a single answer to the questions they were asking about our child. This form gave me such a sense of hopelessness. I had the feeling that when the people at the other end, read this form, they would think from the answers I gave that Evie was a child who could not do anything and that she had no value, and while this might mean we would get a bit more medical or even financial support from somewhere, this was not the most important thing to us. I wanted the people at the other end to know about Evie's abilities. All the questions were wrong. I wanted to be asked about the things she could do. I had become so exhausted by all the ‘could nots’ and how that was always the first thing people asked or saw when they met Evie. So, I decided to make up my own form, to go alongside the official one, with better questions. I was so proud of Evie and all the things she could do, because in answering these questions, I could see how far she had come and how she was growing. Can your child play sleeping tiger and other great games? YES! Evie loves games and interacts by laughing, kicking, flapping and moving close to us. Does your child laugh when objects fall near her face? YES! Evie loves when we drop cushions or soft toys beside her. She laughs when we move or tip the couch and enjoys loud noises. Can your child play for over 30 min in an Excer-saucer? YES! Evie loves being in her saucer and plays with the objects really well. Can your child play with your hair, face and earrings? YES! Evie will reach out to touch our face, pull my hair or earrings. She pulls very gently. Can your child hold her legs and nearly her toes? YES! Evie plays with her knees when she is contented and can almost reach her toes. Can your child hold a spoon and feed herself yogurt? YES! Evie can feed herself approx ½ teaspoon at a time when she is in the right mood and she can feed herself from her bottle. Can your child roll competently? YES! Evie is a pro roller baby! She even commando rolls in stealth mode for extra sneakiness. She will roll to get places really quickly. Can your child do assisted sit-it ups, holding her head up? YES! Evie does this very well using Dad to help her. Her record is 13 in a row! The mother of the child responded so well to this addition to the report and feels a new sense of pride in her child, new eyes to see other areas of development, not only limited to areas of speech and language, but of character and personality. This tiny addition to the paper work, an extra minute in discussion around how this child brings joy to the family, and focused time on celebrating who the child is as a person, has given this family so much hope, encouragement and a deeper relationship and trust in their specialist. Since making these “awesomeness reports”, the specialist told me she is enjoying her job more, she is more connected to her reasons for becoming a speech and language specialist in the first place and she is seeing such amazing positive changes in the people she has the pleasure of helping. Sadly, Evie's life was not long. We had an incredible 2.5 years with her. She was completely compatible with life, just not for as long as we might have hoped. In her short yet remarkable life, Evie inspired a dream – her legacy. I made the international award winning photographic art book, the Super Power Baby Project. I walked into the homes of these families as a stranger, sat with them, listened to their story, built trust, then photographed their amazing child. A stranger no longer. The parents loved having a space to gush about their children and they told me that it was incredibly healing for them, being encouraged to and being able to talk positively about their child. For some, this was the first time. The words we currently use (maybe mostly because of the medical profession) to describe disability are; retarded, incompatible with life, abnormal and disabled – among many other subtractive, negative and limiting words. In our current culture sadly our first thoughts that come to mind when we see or meet someone who looks different to us, is ‘what's wrong?’ These words take potential and even ability away. What we associate with the word disability actually shows up the deficits in our culture which does not accept, encourage, allow room for, or make the world accessible to, all humanity. As I travelled, I noticed consistent themes emerging in the ways the parents were describing their child's impact on their family and the characteristics the child possessed. The parents used words like; unconditional love, perseverance, empathy, compassion, incredible joy. In our culture's relentless obsession with perfection and our desire to follow society's pre-prescribed measures of success, we are reducing our own capacity to cultivate these things. A lot of the parents shared with me, that when they received a diagnosis, the first words spoken by doctor were key in shaping the attitude to how they faced the future. Many told us about health professionals offering condolences as soon as the baby was born because it had Down syndrome, or other differences. First do no harm: Every child should be welcomed into the world with love and kindness. Celebrate life: These children are the ones who will push you as professionals to your absolute potential. They are the ones who will inspire cutting edge therapies and technology. These are the children who are capable of incredible transformational change in their families and communities if they are accepted for who they are and their unique abilities. You are the ones who will travel alongside these families as they embark on a life completely different to the one they had imagined. You will be with these families in an incredible capacity. You are being leaned on heavily, to provide answers to often unanswerable questions. The most important thing you can share with parents, from the beginning is using strength-based language, to balance the many aspects of their new medical reality that is hard. With these children, conventional milestones, growth charts and measurements, and the ‘normal’ way of doing things just are not applicable. Look at what is working and encourage parents to talk about the things that make their child unique. This will give them much needed empowerment, energy and perspective. They will also trust you more. This was what I discovered when making the book – parents desperately needed to be able to talk positively about their children and many of them did not feel that they had a right to, because their child was not reaching those traditional milestones. Some families had never used positive language when describing their child before. Because from day 1, they had learned that limitations or a syndrome defined their child. This is where you can make a huge difference in providing care for these children. Even if you were able to spend a minute of each session asking about even just one thing that their child does that brings the parents joy. This kind of involvement and interest in their child's changes and developments, no matter how small, will enhance the relationship you have with the family.