BiographySusan was born at 33 weeks,a little dot, but after shaky start she was a happy toddler. School saw the start of some social issues and selective mutism, shyness etc were suggested. Yr 5 saw a dramatic change. The tolerance to noise light etc brought migraines and tiredness. Looking back now this was probably the start of the ME. 4pm after school she would pass out cold.
Music became her friend. The transition to high-school tipped the balance and our happy smiley little girl disappeared. She lost weight, began shaking, had dizzy spells like panic attacks but wasn't visibly distressed. She managed 1 term before the consultants removed her for medical tests. Addisons first then others followed. 4 different hospitals we were under in the middle of the pandemic. I lost count of the needles, bless her. By now Susan was sleeping most of the day and night and when she was awake was too scared and anxious to go out for fear of collapsing. She washed her hands and arms raw. She couldn't enter rooms, touch her clothes, go up and down stairs for OCD issues. She would go two steps and curl up in a ball and sob. It's heart breaking to not be able to reach your child and help them.
Eventually Camhs picked her up in January 21 and alongside the Cfs/ME team they have been supporting her to learn how to tackle her OCD so she can get some life back. Next we start on anxieties then managing the fatigue. It's a holistic picture and a long journey.
Susan's High School have been great. Having missed over a year of school we have now got 2 lovely medical needs tutors online for 2 hrs a week. Baby steps as she wouldn't touch tech for months but we are trying. They both say the best part of their day is at the end of their lessons with Susan when she gets her guitar and plays for them from the sofa. Of course this is only the tip of the iceberg of her story as we all have more to tell of tears and tempers but we hope Susan's future
Will be brighter, we know it will be a long journey, we are just at the start. Her guitar is her anchor, she often falls asleep with it!
The amazing job you and all your quilters do brings joy, smiles, love and hugs that are much needed for our children. Thank you so much for hugging my daughter and being a part of her journey to make her feel safe.
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