BioMed
The birth of extremely premature twins forces parents into decisions without good outcomes.
A list of medical labels can hide the child it describes. With time, a parent can move past the words that name the problems and see the person: his smile, his humour, his delight. Love can come to rest on who he is, with or without his disabilities.
After a death we want the ending to feel just and understandable. So we announce that we are done, as if saying it could close the matter. In truth no goodbye is enough, and the bond goes on after the life ends.
Self-pity can give way to a plainer question: if I don't sit with this child, learn his care, and question every move the doctors make, who will? Attention shifts from what the parent lost to what the fragile child needs. In this way the parent becomes his advocate.
Parenting a medically fragile or disabled child can be the loneliest experience there is, and nothing prepares you for it. The intense bond formed beside an incubator leaves little room for anyone else. One parent can feel she alone is able to go where the child has gone.
A crisis calls up a mother who is selfless and never tires. The mother who grieves and feels left behind has to wait, and often surfaces much later. Grief that is put off to give care does not vanish.
Hope, joy and life can sit right alongside despair, sadness and death without cancelling them. A shattering story can still be hopeful, even enjoyable. A child who brought great pain can also be a parent's greatest teacher.
We act as if we can want things and get them on our own terms, seeking pleasure and dodging pain. That belief breaks the moment suffering arrives uninvited. A child long hoped for can come in a form no one would choose.
A parent may ask doctors to let a doomed newborn die and be told it cannot be done. The power to rescue a one-pound baby can move the decision out of the family's hands. Medicine can also do far less to help the family live with the outcome it fought for.
Saying aloud that you did not want a fragile child to survive draws strong reactions from others. Yet a parent can love that child deeply and still not know whether she would choose differently. Holding both truths at once is honest, not a failure of love.
Medical authority can override what a person knows about her own body and turn a private loss into a clinical case. A woman who understands she is miscarrying can find her experience renamed and managed by others. Doctors can sound hostile or careless without meaning to.