A family who visited us from an eastern state of India with their daughter, nearing three years noe, was operated upon at five months of age for hydrocephalus. The MRI of the brain showed large collection of fluid in the brain even after surgery. Fortunately the operation helped from further enlargement of the brain with fluid.
The child was mostly drowsy with no or minimal hearing or visual ability. The limbs were wasted and were not moving. She was anaemic and suffering from severe malnutrition. The respiratory and cardiac status did not seem to be satisfactory. The family borrowed money and came to visit us in the hope we would be able to offer some respite. After two days of evaluation by my colleagues, they did not find much prospects in making a difference in her developmental progress.
Father a casual labourer had even thought of finding a job somewhere here and to seek help from us for her developmental support.
At the end of the conversation to seek a way forward, for their only child, the family came to realise that it was better for them to be near their extended families at this time when the future does not look too good for her.
The family has had many losses. The declining health of their daughter. A huge debt to pay back. Some extended family members attributing this to mother's 'inability' to have a normal child. Mother having to stay alone with her daughter, as father comes only during week ends on on account of his job elsewhere.
I felt the grief and loss of the family intensely and got in touch with a paediatrician whom I know from their hometown to find help for the family. She was more than glad to offer help.
At the farewell occasion, while breaking the news with the family about the deteriorating state of health of their daughter, I anticipated grief to overwhelm them. Although it happened, there was a growing realisation to think about their future while offering their care for their daughter.
I encountered a helpless situation while preparing the family for palliative care of their daughter.
A child denied the opportunity of fullness of life!
It is likely that I would have welcomed about 32000 families during the last thirty five years during my full time Developmental Paediatrics practice at Chennai, Vellore, Pondicherry and now at Kolenchery. As I restricted to welcome only children with neuro-developmental needs, I encountered the experience of 'reduced living' of children and families on account of the multiple needs they encountered.
But there are some families that I remember vividly, who inspite of a devastating experience who were able to go beyond the boundaries of their limitations. The mother whom we welcomed yesterday is an artist, dancer, and a social worker. She travelled beyond her grief. She is a source of hope to others.
This is a witness to the universal Grace of God in human lives.
I felt the family affirming me of a good a reason to have been in life long practice of Developmental Paediatrics.
During the three hours I spent with the family in two days, I experienced the process at work in the life of a family to make sense of purpose of life while travelling through a 'valley' experience. For them, their daughter was 'given' to them and not matter what was her ability of limitation, they had her in their hearts generating in them self-giving love and endearing mindfulness towards others who have burdens to bear!
I witnessed how grief can create an enlarging and compassionate outlook to life!
Their daughter receives their care and not well enough to reciprocate to their loving acts. Yet the family is abundantly self-giving! This is a gift the family offered to me- to give without counting the cost!
The family helped me to look beyond the rare dysmorphic syndrome that the child is suffering from! The parents saw in her the imago die, created in the image of God, and they honour their child with their lives and service!
The family was God sent to me, at a time when a medical colleagues has left for her further training and two others awaiting to leave following their marriage!
This family through their visit brought a reminder of the sacredness of the mission to children with neuro-developmental needs and their families!
M.C.Mathew (text and photo)
No comments:
Post a Comment