A Glanfield parent's story: Claire
Claire Ford writes ... I am the mother of a severely disabled child and a Paediatric
Nurse by profession. My son James was born with a congenital heart defect which
was only diagnosed 15 hours after he was born. He had multiple surgeries and at
5 months of age he underwent surgery for his heart, and due to post-operative
complications he now has quadriplegic cerebral palsy, visual impairment, and
epilepsy. He is 4 years old and cannot walk, crawl, sit or talk.
I took home a baby who could no longer breastfeed, or hold his head up let alone recognise me. He could not cope with noise, with sudden movement, there was no reaction to voice or light. In fact he was like a vacant doll who was terrified of the outside world it seemed all he could do was cry a high pitched cry.
Inside I was barely surviving. I felt alone. I was grieving for the baby I once knew and desperately wanted back. I was suffering from chronic sleep deprivation, I was fearful of the new path we were suddenly catapulted into, a path I only knew full well as a professional but never fully understood as a mother. A path of endless clinic appointments, of health professionals entering your own home, medications, specialist equipment, boxes of formula specialist milk feed with no space to put it in, the list goes on. Our home felt like an extension of the hospital, and yet somehow I had to lead as normal a life as possible for James' elder brother Henry.
I took home a baby who could no longer breastfeed, or hold his head up let alone recognise me. He could not cope with noise, with sudden movement, there was no reaction to voice or light. In fact he was like a vacant doll who was terrified of the outside world it seemed all he could do was cry a high pitched cry.
Inside I was barely surviving. I felt alone. I was grieving for the baby I once knew and desperately wanted back. I was suffering from chronic sleep deprivation, I was fearful of the new path we were suddenly catapulted into, a path I only knew full well as a professional but never fully understood as a mother. A path of endless clinic appointments, of health professionals entering your own home, medications, specialist equipment, boxes of formula specialist milk feed with no space to put it in, the list goes on. Our home felt like an extension of the hospital, and yet somehow I had to lead as normal a life as possible for James' elder brother Henry.
I was reaching breaking point fast. On a full moon-lit night, desperately trying to find a way to soothe James' crying, I placed him inside my pyjamas (what we nurses call 'Kangaroo care', skin-to-skin contact). After half-an-hour he stopped crying, his once stiff little body was now relaxed so I did not dare move. The silent tears turned to huge waves of sobbing as I pleaded with God to give me a break. I wanted everything to stop. I felt I had no more strength, no more hope. James started to make a familiar yet unfamiliar sound of cooing. I thought it was yet another one of his seizures. I looked down to find him smiling back at me. His first smile since he left hospital, the light of the full moon beaming through the curtain-less window upon his little face. Was this a sign from God?
What happened next was a true answer to my cry for help …
What happened next was a true answer to my cry for help …
At Henry's previous nursery the Business Manager, Lindsey Dodsworth, came to offer support and help. During a conversation we learnt that she has been a helper volunteer for The Glanfield Group for many years. With our agreement she put James' name forward, and that year we went to Lourdes with the Glanfield Group for the very first time.
At the airport check-in desk there was a sea of disabled children and adults. Henry clung on to my leg, James cried at every new voice he heard, and I was bracing myself and wondering how I was going to cope for a whole week with so much disability around me. They all seemed so happy and excited, but I felt stressed and anxious. I was fearful that the carers would not be able to understand James' non-verbal communication. I was anxious for Henry too. Suddenly I had an extra pair of hands doing all the lifting and carrying of James. My hands felt lost. I felt lost. Henry held himself back and observed from a distance. James closed in on himself.
At the airport check-in desk there was a sea of disabled children and adults. Henry clung on to my leg, James cried at every new voice he heard, and I was bracing myself and wondering how I was going to cope for a whole week with so much disability around me. They all seemed so happy and excited, but I felt stressed and anxious. I was fearful that the carers would not be able to understand James' non-verbal communication. I was anxious for Henry too. Suddenly I had an extra pair of hands doing all the lifting and carrying of James. My hands felt lost. I felt lost. Henry held himself back and observed from a distance. James closed in on himself.
It wasn’t until halfway through the pilgrimage that we began to relax. For Henry he made friends with siblings of other disabled children. He hugged me during night prayer and whispered that it was the best time of his life. He drew a picture of a large house with all the Glanfield people living in it. For James he was given opportunities to explore his environment, and singing was to unlock a whole new world to him. He can now independently sing (not in words) but in tune all his favourite nursery rhymes, including the Glanfield songs too!
For me it was and still is a journey to restoration. Restoration of hope, of faith, and with it has come healing. Sharing our experiences with other families who are going through a similar situation, the tears, the laughter, but all the time feeling that we are not alone in our journey. That week gave us rest from carrying our load. That week enabled us to take up our load again, a load that now we see as a beautiful gift from God.
Glanfield was at first just a name; it has now become our second family, our lifeline.
For me it was and still is a journey to restoration. Restoration of hope, of faith, and with it has come healing. Sharing our experiences with other families who are going through a similar situation, the tears, the laughter, but all the time feeling that we are not alone in our journey. That week gave us rest from carrying our load. That week enabled us to take up our load again, a load that now we see as a beautiful gift from God.
Glanfield was at first just a name; it has now become our second family, our lifeline.