The end of Carer’s Week being a carer to a child with profound needs

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It’s the end of another Carer’s Week. This post is a shout out to all of the parents who, like me, care 24/7 for their disabled child with profound care needs.

Many of us administer medications on a daily basis which truly save the life of our child. I’m not talking Calpol. I’m talking medications such as epilepsy meds which keep our child from dying in a seizure or going into status or not waking up due to SUDEP.

Many of us monitor O2 levels, heart rate, and lung function throughout the day and night.

Many of us do physio/OT work on our child with hip dysplasia, scoliosis, cerebral palsy, and/or osteoporosis without even blinking an eye.

Many of us give complete bed baths to our fragile child, all the while being mindful of positioning to avoid further complications to an already complex care regime.

Many of us have watched our child turn blue while in a seizure, yet remain calm as we administer the rescue medication and grab the O2 and place the mask or cannula on our child’s convulsing face.

Many of us clear airways, monitor aspiration risks, mindful of positioning while sitting, lying down, being transported or repositioned.

Many of us do this alone as single parents.

Many of us do this despite our own increasing physical and mental health struggles.

Many of us do this work with literally no break, no free time, as our child is housebound or bedridden.

Many of us do this work without any respite or home help.

And we all do this without pay, especially pay commensurate with the level of skilled medical care we provide. Nor do we have a building pension to help care for us when we are the ones who will need the care.

So to all of you who walk this same journey, and as another Carer’s Week comes to pass, I extend my solidarity to you. Let’s keep advocating, keep fighting, until the systems that should be supporting our children’s needs, and indeed our own needs as carers, are reformed to the point we no longer have to fight for even the most basic of needs to keep them alive and thriving. Let’s support each other as best we can while trying to keep our own heads above water. For our precious children.

 

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