So your child has just been diagnosed with a chronic illness or disability, and you just feel as if the rug has been pulled out from under you. It is likely that you are very emotional: angry at the diagnosis and how it has come to be, grieving that their life is now different and that your hopes and dreams for them are demolished, jealous of other parents whose children are ‘normal’, and feeling confused and alone because you don’t know where to turn to for help.
This is one of the most stressful experiences for you and your family. How parents cope with a diagnosis will vary. Often, coping will be an ongoing process with many ups and downs. Situations like this can put even the most solid relationships under tremendous strain. It is important to remember you will get through this, it just will take time.
There are lots of different strategies parents can use to help themselves and their families through this. Working out what strategy works for you is part of the coping process, so you may have to try different approaches until you find what works best. This is what I have learned.
Focus on self-care as well as you can.
When we are stressed, self-care is often the first thing to go. It’s like what flight attendants say on a plane: put on your oxygen mask before helping others. Looking after yourself is not selfish. That’s how you will ensure you are in the best possible position to look after others.
Give yourself permission to feel your feelings.
This means especially the really challenging ones. Be kind to yourself. Avoid negative self-talk where possible. You are doing your best. Family and friends can be great supports, so don’t forget to lean on them. But remember sometimes we may need professional supports like a counsellor to help us see the wood from the trees.
Give other family members permission too! You and your partner may deal with your emotions differently at different times. Try to give each other space to do so, and do not judge one another’s way of coping. Talk to one another as much you can. The same goes for other family members. Being able to tell your family and friends about what is going on will make things easier, as you will not have to put on a front about how you are managing.
Learn about your child’s condition.
It is likely that the first time you got the diagnosis you went into a tail spin and heard nothing that was said. Where possible, bring a second person to appointments to help ask questions and take notes. Do some research online, but make sure you are looking at reliable websites. Don’t assume all information online is correct. Check out if there are any local support groups (some are available on social media too). Maybe your health professional can recommend a parent who has had a similar diagnosis that you can hear how they managed. The aim here is that you realise you are not alone and are equipped with good information on how best to meet your child needs.
Remember your child is more than their condition.
Your natural instinct may be to wrap them in cotton wool, but now more than ever you need to allow them to live as normally as other children their age. We know that children are resilient, so give them space to find their own path.
Ask about financial support
Chronic illnesses and disability can put a financial strain on families. Ask questions, find out what is available, and become fully informed about what supports your family is able to access.
Try not to cross bridges! If you stay in the present as much as possible, you will be better able to manage what will become your new “normality” and make sure to enjoy the happy moments.
This article was contributed by Tusla Limerick PPFS team, a member of Parenting Limerick.
