Return to flip book view

Message Written by a Parent-CarerFindingYour WayA Guide for New Parents of a Medically Complex Child

ContentsIntroductionHow to use this bookletThe use of “disabled”Learning to care for your childWill I ever know enough?Where can I learn how to look after my child?Finding informationWhen you don’t know why your child is feeling upset or unwellMaking changes to how you care for your childManaging relationshipsRelationships with professionalsWhat does good professional support feel like?Tips on how to manage relationships with professionalsYour relationships with family and friendsYour relationship with your partnerYour other childrenMaking new friendships and connectionsSingle parenting677889101315171718202225272930

So much to doThe big things on your ‘to do’ listWhat to apply for and when to apply for itOccupational therapy – equipment and adaptationsHouse adaptationsChanging your house for your childFree nappiesRespite and supportWho else might be able to care for my child?Looking after yourselfMeeting your basic needsSelf-care ideasManaging emotionsThe pain of comparisonsFeelings about disabilityFinal words : the positivesResourcesWhere can I find other parents like me?Organisations and contacts35383943444545464650515356596063656566

8Introduction Nearly a decade ago I gave birth to my first baby. I held her in my arms for a few minutes before she was taken away to NICU. A week later I was told that she had a serious chromosome condition which would affect her in many ways and that she was unlikely to live a long life. Her diagnosis marks the moment where I was severed both from my old life, and from the future life I’d imagined for myself when I’d been pregnant. I felt abruptly dumped in a brand-new world where I didn’t understand the language and had no idea how things worked. I had never spent time in hospital before and knew nothing about medicine. Every day seemed to bring more professionals into our lives, and we were introduced to organisations and services I’d previously had no idea existed. Alongside this, I was learning to be a mother, recovering from childbirth and trying to absorb the news that my fragile baby, whom I loved with a certainty I’d never known before, was not expected to survive for long. And so started a life that took me down paths travelled by few parents, and which has been harder, yet more rewarding than anything I’ve experienced before.Ten years later and my daughter is still with us. She has a profound learning disability, doesn’t walk or talk and is medically complex in a number of ways. She needs medicines, machines and therapies to support many of her most basic functions. But she is an exceptionally happy child and very much loved. I have learnt to love the life that was handed to me with her diagnosis and I’m grateful that I’ve been able to find acceptance and happiness despite the difficult circumstances.Life is still demanding and full of challenges, but now I understand the world I landed in ten years ago. I know how to navigate through the terrain, and I speak the language fluently. For the last five years, I have found paid work helping