Tag: medically fragile child
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Christmas in hospital with other children
This Christmas wouldn’t be in hospital. I suddenly knew why some people hate Christmas. I could be depressed, or I could focus on the good.
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Medical Definitions – From a Carer
Here are my medical definitions, adding some detail from my experiences. As carers and parents of children with medical conditions and disabilities we learn lots of new terminology. We don’t always catch the meaning the first time we hear them. Acute – A sudden or severe episode/illness that comes out of nowhere. I often said…
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Exercise in the hospital
Doing many admissions with Matthew, exercise in the hospital was the only option. Special needs mum’s need to take care of themselves & exercise is a great step!
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Palliative Care for a Child
Being referred to palliative care for a child can be terrifying, but actually their roll is to help their patients & families get the most out of life.
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Special Needs Parents – Hot Marriage Secrets
Special Needs Parents & Hot Marriage Secrets? Are you crazy? I can see the mum now, totally worn out, hasn’t thought about dressing up & going out in months. “My marriage hasn’t been hot since our honeymoon. Let alone since our special needs child was born.“ Sure, and you’re not alone. Marriage Breakdown as Special…
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Dealing with Death – after you have lost a Child
I never considered before what dealing with death after I lost Matthew would be like. It’s Father’s day.Today I am mourning another little person gone too soon. I absolutely 100% knew dealing with death of children close to me would happen. But I didn’t know how it was going to affect me. Another blow Yesterday…
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Caring for a Child with a Rare Condition
We didn’t know we were living with a child with a rare condition. Where we started; Our first peek into the world that is fragile & complex medical conditions, was when Matthew was just 9 weeks old. We had been at our parent’s for dinner. I gave him a bottle/feed before we put him in…
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Relocating for our Medically Complex Child
Relocating for our medically complex child was never just about him. It was never just about Matthew. Between having the idea and actually moving, was around 6 – 8 weeks. Such a strange thing to happen, living in your big beautiful home that you once picked out the colours, tap ware and furnishings for. Then…
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Not Just a Special Needs Mum – Getting Yourself Back
The day I realised that being a ‘Special Needs Mum’ was part of my identity was an interesting moment. I was on the other side of the world, in Cleveland, Ohio. I had packed myself up and taken myself to the other side of the world, to work on me. To learn from someone that…
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Mental Health & Nutrition for Special Needs Mums
I don’t have time to think about nutrition. It’s not possible to do mental health & nutrition for special needs mums! I have heard it literally hundreds of times. I was the same for the first few years of Matthew’s life. But something has to give. How prepared are you for the cost of not…
The Savage Self-care Coach 