If you have just received a diagnosis for your child, you are facing something that no parent should have to face.
I went through this twice, with both my children, and have put together a Survival Guide to help others in the same situation. I hope it helps you:
1. Connect with your community
Whether your child has been diagnosed with a relatively common condition or an extremely rare disease, you are in good company.
My youngest child Charlie has CDKL5 Disorder, a condition that is extremely rare (1 in 100 million). But when he was diagnosed, I did a Google search and quickly found a global support group on Facebook. I have even met other CDKL5 families living in Australia.
Families like this are an amazing source of information about medical treatments, therapies and importantly, emotional support.
You could even make lifelong friends with fantastic people you never would have met otherwise.
2. Get the professionals involved
If your child is diagnosed with a profound disability, you experience a kind of grief that is quite unique.
Some specialists call it “Chronic Sorrow” because it is a lifelong process with no end point. There is another kind of grief called “Anticipatory Grief” which is experienced by parents who have a child diagnosed with a terminal illness.
My particular kind of grief was a hybrid of these two types. My son will be profoundly physically and intellectually disabled but to make matters worse, his condition also comes with increased risk of sudden death.
So not only do we fear for him in the future when we are not around, we are also terrified that he won’t outlive us.
I don’t say this lightly but this situation is best left to the professional counsellors. If money is tight, as it often is for families caring for a child living with a disability, there are children’s charities (e.g. Variety) and other not-for-profit organisations (e.g. Carers Australia) that can provide respite services and counselling.
I really recommend this especially in the early days after the diagnosis.
A counsellor provides something that friends and family can’t provide – a person to listen to your darkest thoughts without judgement and to help you learn to live with the grief.
If you are anything like me, you also don’t want to overburden your friends with your negative feelings. They do play an important role in your recovery but for me it was more about distraction and reminding me that I can still have fun.
3. Stop the negative spiral in relationships
The divorce rate shows that marriage is a tough gig at the best of times. Add a child with a serious diagnosis into the mix and you have the perfect storm for divorce.
When two heartbroken parents grieve differently for their child, this can cause terrible friction in the relationship.
Some people are overwhelmed by anger and take it out on their partner. It’s important to note that this is not the case for all families – many couples feel that this experience has brought them closer together.
From personal experience, I know that the pure exhaustion from sleepless nights worrying about your child can mean that you simply have no emotional energy left for your own marriage.
Then there are also the siblings. They can be severely affected by the diagnosis too and will feel a mixture of emotions about the situation – but they lack the emotional maturity to handle it. This can lead to all sorts of issues including depression, anxiety and anti-social behaviour.
The good news is that all these relationship problems are predictable and that means you can be proactive to stop the negative spiral.
Get a sitter or respite carer to go out with your partner at least once a month – even when you don’t feel like it.
Take this time to reconnect and build intimacy in the relationship. My counsellor recommended that we set aside time each week to tell each other what we found helpful that week and one thing that the other could do to make life better.
This process can help stop small issues from blowing up into problems that are unmanageable. Parents also need to spend time one-on-one with their other children and encourage them talk honestly about their feelings without reprisal or guilt.
4. Put the happy back into your life
You definitely need to give yourself time to grieve for the child you expected to have and the massive changes to your life.
One of the best ways to start the healing process is to take back control of your own happiness. They say that the secret to happiness if a positive outlook, and I agree.
When I look at my situation with positivity, it makes the difficult days more manageable.
I started by writing a list of the things that make me feel happy and then I made a concerted effort to allow them into my life. It doesn’t have to be expensive… it could be as simple as a walk by the ocean, a picnic with your mothers group or cooking your favourite meal. But you do need to make it happen and enjoy it. I have found the power of music is incredible. When I am listening to upbeat music I never feel upset. No matter how hectic your schedule is, there is always a little time to put the happiness back in.
To give you an example of how you can put the happy back into your life, I developed a community program called The Magical Bears that donates a teddy bear to children living with a disability on their birthday. I have set up an online store to sell Magical Bears and books to fund the donations. I get so much pleasure from knowing that I am supporting these families – it keeps me going on the darkest days.
If you have anything else that has helped you cope with your child’s diagnosis please SHARE with others in the comments below.