A mother’s love

A mother has shared her story of loving a child with complex disabilities and life-limiting epilepsy as part of the Disabled Children’s Partnership (DCP) campaign.

  The DCP is a coalition of charities working to improve the understanding of the challenges faced by families on a day-to-day basis and campaigning for change. In its Secret life of us campaign, the latest story comes from Rachel, a mother. Rachel explains life with an 11 year old who didn’t breathe on delivery and was diagnosed ten weeks later with severe brain damage. This honest account gives Rachel’s thoughts in the early hours as her son stirs. She says: “My body feels pinned to the mattress with a fatigue that comes from over a decade of interrupted sleep.” Reflecting back on the previous night, Rachel continues: “Other people’s voices often crowd my thoughts, and in the middle of the night it is the physiotherapist’s voice that comes to the forefront as I try to position my son in a way that will limit any distortion of his growing body. “Eight times through the day I will hear the words of the half dozen doctors handling his care as I draw up a cocktail of syringes to manage his many diagnoses. I’ll check stock levels and expiry dates before contacting the local pharmacist, with whom I’m on first name terms.” She recalls discussions with the many professionals who play a part in her son’s life – from the school nurse to the dietician and the occupational therapist to the local authority. Some are lengthy, some disheartening, some will require more time penning emails to complain for better provision. The emotional story ends with Rachel getting up to go to her son’s room, where although he cannot see his mother his face “breaks into a huge smile of recognition and slowly his lips purse into a kiss.” “Would you like to get up?” I ask. “Mmmmm,” comes the response. “A vague noise to many but a thousand words to me.” “And so the day begins. A day of loving, of smiles, tears and laughter. A day of ordinary and extraordinary, a day of feeling misunderstood and finding solace in my tribe. Of hard work and frustration, of tasks and satisfaction. A day living out my toughest job and greatest joy: being the parent of a child with severe and complex needs.” Sign-up to support the DCP campaign here. Find out more about the Disabled Children's Partnership.
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