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Every parent knows how it can be tough when their teenagers feel they need them less and want to live their lives more independently. When that young person has a liver condition it can make it harder – for the child and their parents.

Jamie’s story

Jamie who has biliary atresia and received a liver transplant when he was six months old, has always loved football. Last year when he was 18, he was offered the chance to spend the summer coaching children at summer camps in the USA. While it felt like a dream come true for Jamie, his mum, Pamela, was apprehensive.

“Football is such a huge part of his life, but this would mean three months where he would be responsible for taking his own meds,” she explained. “I’ve always been here to remind him, and I was worried that with all the excitement and distractions, he would simply forget. The thought of him then becoming ill so far away was frightening.”

Pamela didn’t want her own worries to stand in the way of such a huge opportunity for Jamie so last summer he flew out to Los Angeles and says it was the best thing he has ever done”.

“I absolutely loved my time in America,” says Jamie. “I travelled around Southern California and was also based in Arizona for a few weeks but found this tough as it was incredibly hot. My favourite place was Los Angeles and I got to see all the sights. I was nervous going there as I’ve never been that far away from home by myself. My mum was worried I would forget to take my medication, but I did remember to do it. I wasn’t worried about my liver condition as I don’t let it hold me back. It was an amazing trip and if it wasn’t for Covid I would have gone again this summer. I really hope to get back next year.”

Jamie loved his time in the USA

 

He even made it into the local press (back row middle)!

Pamela is delighted that the trip lived up to expectation – and even more pleased that they both coped with the 3000 mile distance. “I did get used to it,” she admits. “Jamie knew he just had to take his own meds and was surprisingly good at keeping in touch. We did regular video calls so he was able to reassure me that he was looking after himself as well as tell me what a great time he was having!

To any other parent who has the same concerns as me in a similar situation, I would honestly say ‘let them go’. Trust your child and give them the chance to show you they can cope without you nagging them. It will actually be good for you both.”

Zoe Taylor, a psychologist who specialises in transition at Birmingham Children’s Hospital says that Pamela’s feelings are shared by many in her situation.

“As parents we look towards the new stages for our child, their first steps, starting school etc. and encourage and celebrate with them. However new stages can also bring worry about how their child will manage. What if letting go mean they aren’t safe?

“For parents of a child with a liver condition, you experienced your child’s life in danger so it is natural to want to protect them. It can feel scary to think about stepping back and normal to feel a loss of control and like you are not able to protect your child. Being the primary care giver is an exhausting job but something we come to feel comfort and safe in.

“Gaining independence is a natural progression and encouraging realistic levels for their age, abilities and limitations is important. Your role changes from primary care provider, to providing emotional support as your child learns to manage their own life and health. It is OK if this feels tricky to allow trust your child with this increased responsibility and negotiate new ways of doing things.

“Parents are role models for a child at all stages and your child will learn new skills from your actions. At times you might feel like you’re being pushed out or pushed away but your role is incredibly important in helping them grow. Remember that your child is able to display these independence skills because of your support and help.”

Tips to help parents let go

  • Acknowledge how you are feeling, it is normal, valid and OK to find letting go hard.
  • Reach out to others in the same position and talk about your concerns – Look after yourself and be kind.
  • Your child is changing – help them learn by watching you, trying out and encouraging. Give them ample opportunities to see skills modelled for them as well as practice new skills.
  • Reflect on what it felt like for you at their age. Your child might push back and not understand how you feel and this might create some tension. Be honest with them, tell them you are finding letting go hard.
  • Part of letting go is reconnecting with yourself and what you may have lost or given up in your parenting journey. This might feel scary but putting some focus back on you can be a positive step.

Are you a parent who has found letting go difficult? If you have any experiences or tips you would like to share we would love to hear from you. Please contact us at press@childlliverdisease.org.

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