Combining Parenthood with intensive Care

Kim van Zijp: mother of a 9 years old Jesse (JEB non-Herlitz)

August 19, 2002: Jesse is born; the first child of Kim. But soon the parents saw that something was wrong; blisters everywhere; Jesse was born with Junctional EB, non-herlitz, and that would mean a life of pain, itch and fear. Kim had looked forward to the birth of Jesse, and really wanted to be a mother. But from the first day of his birth the world turned upside down, different rules applied. A few days after the diagnose of Jesse, Kim had a consultation with a social worker, who told her to demand as much help as she could. But Kim ignored what she meant at that time. Yet it soon became clear how intense Jesse's needs and care actually were; day and night feeding, giving medication, caring and bandaging wounds, blisters and stinging ointments. And every action took a lot of energy, because the guilt caused in having to hurt their child while treating him was indescribable. And at that time Kim  understood what the social worker had intended: this she could not endure any longer ,taking care of Jesse in this way  would last for many years.

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So finally Kim was convinced that she had no choice but to share the care and regular nursing had to be arranged. But Kim wanted to set up the care for Jesse by nurses according to her own very high standards, and some nurses could not cope with this. Finally she had to accept that other people took care of Jesse in their own way, and lowered her standards, because the disease causes the pain, not the caregivers. Kim really wanted to be a mother and not a nurse; she wanted the nurses to 'hurt' him so that she could read to him afterwards, make jokes, hugging him, could go out with him, and do what mothers do. And although she and her husband were the best caregivers, it was impossible for them to take on Jesse's care all by themselves. They wanted be parents first, wanted to console him and be there for him, and did not want to give EB a central place in their lives.

Soon after Jesse's birth the parents met Jany Fisher, director of a day-care centre with nursing care. Jany was a very skilled nurse, understood immediately the situation and saw what was needed. She took Jesse in for three days a week and she bathed and bandaged him. She gave Kim the confidence that she and her colleagues were just as good as Kim was. For Jesse it was also nice to spend time with other children. In the time that Jesse was in the centre, Kim could look for competent nurses who could take over the bathing on the other days. And that did not prove to be easy, because unfortunately, not every nurse is equally knowledgeable and involved. Think what it means investing in people when they do not appear to be suitable of reliable, at the expense of Jesse. What it means for your privacy to have nurses on the floor at odd hours. Or the soil on the floor, because of dirty shoes, or because a nurse commented on the mess in the house. Or because they pour out their heart to you because they are so sorry for Jesse.

Still Jesse' s parents  were and are of course  responsible for his care, like managing the nursing, financing, supplies, supervision and so on. As a parent of an EB child, there are still the injuries, feeds and stools, clothing, school. You cannot outsource being a parent of an EB-child and that is already stressful enough.

Kim kept going and held on, for nine years now. It was a lonely battle, in Kim's opinion also with the world. She came across a lot of misunderstanding. Stop work and take care of Jesse at home seems the obvious solution, but not for Kim. Unluckily, there are few who understand. Fortunately, Kim's husband and she agreed, they hold on to each other. So does their immediate family; without their support and those of highly competent nurses they would not have outlived all the problems.

That is how Kim finally achieved space to refuel. She could be a mother, work again, and be Kim again. They could afford to go on a holiday, and even look forward to a next pregnancy; with twin-sisters as a result! But life still is not easy; for instance setting limits is a central theme in pedagogy. Every parent will recognize the boundless demands of children and their efforts to set limits and keep them. Children need boundaries to learn to set limits themselves. But with an EB- child it is different: this child is bordered by pain. A more suitable topic for EB parents is how help your child across boundaries.

Jesse is nine years now, has an average weight and length compared with healthy boys. It's priceless how Jesse, after all the problems related to feeding and stools, can now enjoy oysters, an English breakfast and feast on a nice chicken leg. Food means so much: it is growing, enjoying it together and it' is pain.

To conclude the presentation Kim suggested the following device to the audience:

  • What you yourself can do, you have to do, but not at the expense of your own wellbeing.
  • Because you can´t take care of others if you can´t take care of yourself.

Email:

jack.vanzijp@denhaag.nl

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