Hi. I am the main caregiver for my severely handicapped son. He had a traumatic brain injury at birth. He has been diagnosed with several issues including cerebral palsy(considered quadriplegic), chronic kidney disease, legally blind due to cortical impairment, low bone density due to not being mobile. He is fed by a pump into his intestine due to reflux, after having several bouts with aspiration pneumonia. He has a trach which was placed on December 11, 2017. He has a ventilator and is also on oxygen.
I was told in 2011 that his pulmonary system is deteriorating. I feel I lost half of him at birth and now I’m slowly losing other half.
I had a neglected childhood and due to some health issues was told I would never have children. I got my miracle, but why do I have to watch him slowly leave me?

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