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10 Top Tips for RARE parents of RARE children

10 Top Tips for ​RARE parents

  1. Make time as a parent

Always make time just to be a parent. Having a rare disease can take over your life in many ways, things can be challenging but you are still you. It is important to make quality time to just be a parent with your child and remember they don’t see your disease they see their Dad or Mum. 

  1. Communicate with kids 

Don’t be afraid to let your children know about your condition. Most of the time children pick up on things and are aware. If you can explain what you are going through to them in a child-friendly way using simple language in small digestible chunks especially when they are young. Start a dialogue and be honest with them as they get older they will appreciate being involved in your journey and it will bring you closer together. 

  1. Ask for help 

Always seek support if you are struggling with your mental health as a parent. Sometimes, it can be tricky to ask your family for help as you may feel you don’t want to burden them, which is ok. If you want to find support outside of your family unit there are charities and communities signposted in David’s Ross’s blog post here for RARE Dads and mums can reach out to: 

  1. Accept the help

Accepting help when it is offered is not always easy. But if a family member or one of your children is offering you help with a physical task or with emotional support accept it. They are offering it because they want to! 

  1. Feel the feelings

Permit yourselves to feel everything. There are so many corresponding emotions and feelings that go along with chronic illness and rare diseases. Give yourself permission to feel all of them when they arise. Sometimes writing down what you are going through can help to express your feelings. 

  1. Allow time to adjust 

Just as you have needed time to adjust to living with your rare condition let your children process the information you give them. Don’t be worried if they don’t express their thoughts straight away, it can be a lot to take in and time is needed to process this. 

  1. Go with the flow

If you can’t do the activities you used to do with our children, don’t stop doing them altogether. Go with the flow and find ways to tweak things so you can still have fun and spend time with them even if this time looks different to how it once did. 

  1. Pace yourself 

Somedays may be tougher than others. Don’t try to do too much, your family will understand that you need some time to recoup and rest before jumping back into the full swing of family life. They won’t judge you so don’t judge yourself. 

  1. Make connections 

Reach out to other parents who are going through the same thing, they might have advice and strategies for coping that you haven’t heard of before! Take the time to build relationships with people who understand your process. 

  1. Make time for play

Living with a rare condition means that serious issues and appointments take priority in your life. Try and find the time to enjoy yourself and your journey as a parent. Have fun with your children and cherish the good times. 

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