I always think that being a midwife must be a wonderful job, to be there at the very beginning of life, when a new little person is born, and helping the most important adults in their world begin the task of becoming parents. But it must be very difficult for you when things don’t turn out quite as everybody wanted them to, and a child is born with a life-long medical condition, impairment or disability. It must be so hard for you to find the right words or to know what to say to the parents that will help them overcome the sadness and shock that this sort of news can bring. Yet what you say and how you say it is more important than you’ll ever know, because parents will look to you as being the expert at a time when they feel lost and broken and may desperately need someone to show them how to react.
I know so many parents of children with disabilities who look back on those early months, and realise now that they were lost in a fog of overwhelming sadness and despair, to the point where they couldn’t see any hope or joy in their child’s future at all. For many mothers of children like my own son, their early months or even years of parenthood were blighted by post-natal depression where everything felt hopeless and they found it really hard to connect with their new baby or even with the rest of the world.
What makes it harder for you is that you seldom see the happy endings that I know so well. The information that tends to be available to share with the families in this situation tends to be factual and medicalised, written by clinicians who see the worst case scenarios of small children with disabilities who spend long periods in hospital fighting for their lives with endless complications, pain and suffering. The reality of disability is actually so different, and there can be happy endings, no matter how tough the early years might have been.
Let me tell you about my son, Toby. He was one of those worst case scenario babies who spent nearly all of his first six years in hospital, fighting for his life. And yes, there were times back then when I was close to being heartbroken, and things were very tough indeed. But do you know who pulled me through those years? Toby did. His tenacity, his spirit and his determination to stay with us when nobody thought he could possibly survive kept me going. I didn’t realise it then, but he is the best teacher I’ve ever had. He has taught me so much about what really matters in life, about love, about kindness, about patience and tolerance, and that the world is full of good people. He found his place right at the very heart of our family, and he is the absolute core of what keeps us all together, incredibly close and as a strong little team that keeps him safe. Yes there have been times when it has all been incredibly hard work, but whatever we have given him he has given us back a thousand times over. His brother and sister have developed into strong, caring and compassionate young people who are his biggest advocates and protectors. He has taught them about life and love and trust and care – the things that really matter, and that make my heart swell with pride when I see all three of them together. Along the way, Toby has brought us all into contact with some amazing and dedicated people, and he just has a knack of bringing out the best in virtually everyone he meets.
Toby is now 22, and he is still profoundly disabled. He has a cognitive functioning level similar to a mainstream toddler and he can’t talk, but that doesn’t stop him making it abundantly clear what he wants or how he feels. He has a slapstick sense of humour, a smile that makes the sun come out, and he loves playing hide and seek or watching anything with Mr Tumble in it. He will always need round the clock care, and he will never be able to hold down a job, but that doesn’t mean that his life is not worth living. We all contribute to society, and the contributions that people like Toby make cannot ever be measured in financial terms alone, but they are hugely beneficial contributions all the same.
Thank you for helping Toby into the world safely, and thank you for gently placing him in my arms, where his heart has been ever since. You and I didn’t know back then what a huge gift you were giving me, or how very much he would change my world. We didn’t dare hope for a happy ending all those years ago, but that is how things have worked out. Toby may have several impairments and disabilities, but he is still perfect. Everybody has impairments, we all have strengths and weaknesses, and with the right words you can help new parents to find the perfect in their child too.
If you or your team would like some help in finding the right things to say, I’m very happy to help. I give talks and run workshops on this and related topics. Please get in touch with me on email – firstname.lastname@example.org
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