«"To be seen – just a little": A sister's story

On the trade day «"When children are affected – Meeting the whole family in family support work"» under the auspices of the Hospital in Vestfold, 18-year-old Thea Ege Helseth gave a powerful and important lecture about what it is like to grow up as a sister and relative of Stine – a little sister with functional variations and illness. With honesty, warmth and wisdom, she spoke about her experiences, her reactions and what actually makes a difference for children in the same situation.

A life as a relative – all the way

«"I've never had a before and after,"» Thea told.
With only 18 months between her and her sister, she has been a relative her entire life. Stine was born with a rare genetic defect, and throughout her early childhood has had repeated epileptic seizures, many hospitalizations, and frequent encounters with ambulances and specialist health services.

In the midst of this, Thea has grown up with a daily life full of care, responsibility, love, worries and questions that no one always explained.

She describes herself as «"Mommy's little helper", a role she thrived in, but which also made her mature quickly and sometimes felt that someone always needed her more than her. Because even though her family always included her, she was «"the one who did well"» in the face of the system.

When children understand – without understanding

Thea describes many moments when, as a child, she understood that something was different, but lacked words and explanations. Thea was a caring and dutiful child. On the outside: confident, energetic and clever. Inside: a chaos of emotions that she did not dare to say out loud.

She remembers the blue flashing lights of the ambulance at night, all the wires and machines in the hospital, and the first big fear when Stine got a belly button:

«"I knew that you have to eat to live. Now my sister couldn't. No one explained to me what was happening. And then children make up their own explanations – often worse than the reality."»

Thus, much of childhood became a mixture of love, pride, fear, confusion, and a sense of responsibility.

Dare to ask, and show that you know

Thea talked about how little effort it actually takes for her to feel safe and seen as a child, and shared specific tips and advice on how adults can make a difference in meeting children as relatives. Whether it's health personnel, employees in kindergarten or school. About the importance of not waiting until a child is struggling or clearly shows that everyday life is difficult. Those who «"takes care of itself", may be the ones who need you the most.

The lion mothers thank the hospital in Vestfold for listening to those who have experiences from their own lives, and bringing an important perspective to a great and good professional day.