Paulina - a real ray of sunshine

Sonja Klotz gently lifts her daughter out of the wheelchair and into the seat of the swing. Paulina rocks back and forth, she can't talk. "She's looking forward to the swings. I can see that in her face," says Sonja Klotz and gives her 13-year-old daughter a little push.

The sun shines through the dense foliage of tall trees that tower over the garden of the Bethel Children's and Youth Hospice. Frogs give a concert at a pond below the ridge on which the centre stands.

Paulina and her mother enjoy the natural atmosphere in this oasis. "We come here two or three times a year to find some relaxation and relief," says Sonja Klotz. At the children's hospice, her severely disabled daughter receives loving round-the-clock care and nursing. "I can use the hours here with Paulina more intensively than at home, where I have to work from home," she says. It also helps her to share experiences with other affected parents.

Paulina's birth was actually unremarkable, reports Sonja Klotz. "But somehow I always felt that something was wrong," says the mother of four children. Shortly after the birth, the parents received the diagnosis: trisomy 18. Paulina is severely mentally and physically impaired. Among other things, she suffers from a severe heart and lung malformation. A few years ago, she also developed epilepsy. This is why she regularly visits the Bethel Children's Centre, where she is treated with medication. "We also feel very well looked after there," emphasises Sonja Klotz.

Paulina and her mother have been coming to the Bethel children's and youth hospice as guests for several days for many years. Sometimes they are joined by her siblings, who often miss out at home due to Paulina's disabilities. Paulina likes it at the facility for children with life-shortening illnesses, her mother emphasises. "She is involved everywhere here: baking waffles, in the Snoezelen bath, on excursions or making soap foam with the teachers," reports Sonja Klotz. She also enjoys the nearby Bethel riding therapy centre. "I always find her very balanced here."

Paulina clutches a green ball of fabric and sniffs it. "It's her absolute favourite cuddly toy. Half an apple!" remarks Sonja Klotz with a smile. Despite her severe impairments, her daughter is a cheerful child, a "real ray of sunshine". Nothing upsets her. "Unless she gets her hair combed or her plaits plaited," says the 49-year-old Sauerland native. "Oh yes, and unfortunately she only likes cuddles sometimes," she adds with a grin.

Text: Gunnar Kreutner| Picture: Sarah Jonek