When Shai became sick her condition didn’t just affect her, it impacted the whole family. As a family we needed to come to terms with her illness and make changes to our lifestyle, this not only challenged us financially but socially and mentally too. It was hard and still is hard but we are in a place where our lifestyle and routine works the majority of the time. Although I’m not going to lie, sometime we have the occasional meltdown or, “Why us” down days. It’s at this time that I remind myself and our family that we are alive, we are happy and there is always someone worse off than us or failing that I have a good cry and then pick myself up and dust myself down.
Your child’s condition may affect you and your family in different ways. We have the tough job of putting on a brave face whilst struggling to come to terms with our own feelings. It is Ok and it is normal to feel a sense of grief, loss or disappointment, you didn’t imagine this life for your child or for your family. It’s all new to you, it’s a scary unknown factor.
Having a poorly child can also put a strain on any relationship, it is important to talk to each other, be honest about your feelings and although it may be hard try and spend some short time alone with each other. You need time for you, it is physically and mentally draining so for a short time each day, take time out, even if it’s a reading a book, grabbing a cuppa with a friend or hitting the gym. If you don’t look after yourself, you won’t be able to look after your child.
Siblings may often feel left out, and although not meaning too may resent their poorly sibling for taking so much of mummy or daddies time, for not being able to go to the park as promised because of an emergency trip to the hospital. Make sure that your other children know that they can talk to you or someone about how they feel and that it is ok to sometimes be angry or upset by the situation. Although you may not be able to spend as much time with your other child/children constantly remind them they are just as special and brave and important as their sibling and that you are proud of how they are dealing with the situation.
As parents try to take it in turns to be with your poorly child so you can have some alone time with your other children or ask other family members to sit with your child so you could have some time doing something with the others. If you can’t be with your other children due to staying in hospital, phone them daily, each day call to say good morning and good night, ask them all about their day, it will mean so much to them knowing they are just as important as their poorly brother or sister and the most important thing, tell them you love and miss them very much.
A family film or game night once a week where you can all be involved together is a great way to all hang out together and an easy way for your poorly child to be part of a family night. If your child is in hospital, speak to the nurses and play specialists as they would be happy to help arrange this. Try to let all the children have some time together laughing and enjoying sibling banter without mum and dad listening in, use that time to go grab a cuppa. It will help keep that sibling bond strong.
As a family, try to move on from seeing the illness or disability as an encroachment on your life, don’t let it take over. Work together as a team, build on your family’s strengths to cope with this new way of life. Keep talking to each other and find new ways to enjoy doing things as a family. Spend time together that is not focused on the illness.
Something else as a family that we have experienced is a change is our own friendship circles. Some of our friends were not supportive when we had to cancel or change plans at the last minute because Shai had suddenly become unwell or we had to go to hospital. I use to really stress and worry, the guilt really getting to me at having to let my friends down. It wasn’t until our community nurse said to me that Shai’s health and my family were more important that what my friends thought and if they didn’t understand or support us then they were not true friends. On the flip side some of our friends have been an amazing support network, looking after my other children, cooked us meals when we stuck at the hospital and going round and giving my house a good clean. We really came to recognise who our true friends were. So my advice is put your child and your family first, don’t feel bad at having to change plans at the last minute. Your true friends will understand and support you and they are the people you will need by your side during this journey.