One of the first thoughts to cross my mind after my daughter Ariel was diagnosed with Down Syndrome was “I am probably going to get post natal depression now”.
Thankfully, I didn’t. This is not to say I haven’t had some bad days because I have, like all new Mums.
Dealing with the fact your child has a disability can be tough at times.
I like to read a lot of articles and blogs online of about other people going through the same thing. I actually read one a while ago and it has really stuck in my mind, especially paragraphs like this one:
“When we learn our child is disabled, we’re not able to process the totality of what that means. If we were forced to swallow the whole pill at once, we could literally go crazy. So, instead, denial ensues. We take in what we can and ignore the rest until we’re ready to handle more of the situation,” says Grunsted, who recently attended a seminar on grief and denial. “That’s how I see chronic sorrow-every now and again, a layer of denial gets stripped away. I grieve something new.”
After reading this I decided to look into this a little more.
Chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions and/or disability. At its core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. It is the emotion-filled chasm between “what is” versus the parents’ view of “what should have been.”
Living in a ‘Facebook world” we are all constantly reminded what our child is not so I can see how this can happen.
I don’t really think of disability at the moment because Ariel is just a baby – like any other baby. I often watch videos of adolescence and adults with Down Syndrome and that is when I am confronted with how Ariel is going to be compared with what I thought would be.
I don’t grieve for the girl that I thought she would be but I do feel sorrow. I feel sorry for my Ariel because of the way people are going to look at her and for how people are going to treat her. This is why I am constantly working on the blog for her.
I felt this an important subject that I needed to get an expert opinion on, so I spoke to Christopher Koletti from Inner Health Psychology in Sydney, and this is what he had to say on the subject.
“Experiencing chronic sorrow is a common response for parents who discover that their child different to the other children.” Overcoming chronic sorrow is essentially the struggle for parents to accept, cope with, and embrace the difference – rather than mourn it.
One of the most important things a parent should be aware of if they feel they are experiencing chronic sorrow is that is it a normal psychological reaction to their situation. They are not abnormal, weird or strange for feeling this way.
Many parents naturally learn how to manage the sorrow over time, and many families have amazing supports in place that makes this learning possible, but if you are struggling with it, then engaging with an appropriately qualified health professional can help you overcome the chronic sorrow and embrace the challenge of raising your child.
When does Chronic Sorrow (CS) start affecting parents?
Chronic sorrow can manifest itself at many points in your life with your children.
But what these points have in common is that they are all stages in life where a “difference” in noticed. For example:
- A difference can be noticed at birth when a disorder or syndrome is diagnosed and that makes your child ‘different’.
- Later in childhood if your child develops a difference such as when children who develop autism, or a learning difficulty.
- In later life if your child identifies to you that they are different, such as when a gay or lesbian child comes ‘out’.
At all these different points and more, parents can experience CS.
What is common to all of these different points is that the parents, not the child, have identified or become aware of difference that was already part of who their child is.
As a result of realising the difference parents often grieve for:
- The original hopes, dreams, wishes and fantasies about what their child will achieve or accomplish in life have had the foundations shaken or in some cases completely destroyed.
- The life they had planned out for themselves and the loss of the lifestyle they had hoped to lead which is now forever changed and will be different from this point on.
- The difficulties both they and their child will experience when engaging with society’s current values; they worry about how their child will be treated by it, and how they themselves will be treated by it.
Overcoming Chronic Sorrow
The struggle to overcome Chronic Sorrow is essentially the struggle to:
- Accept your child’s differences without perceiving them as negative, just different.
- Accept the changes in your life’s planned pathway, and adapt to the new pathway.
- Develop new, appropriate expectations of your child.
- Develop TRUE unconditional love for your child. After all its easy to love a child that is made to and fits your expectations, but to love a child unconditionally who is different to what you expected and to love them for who they are , so unconditionally that you cannot see their differences as negative, that’s the key to beating CS.
A good starting point is to try to keep reminding yourself that there is nothing wrong with your child, they are different, not wrong.
They are special and valuable in their own way and their difference is part of their unique individuality.
Finally, it is important to understand that not only parents are susceptible to feeling CS.
Grandparents, uncles, aunties even sibling have all been known to experience these feelings and may also require help and support to get through it.
If you need help dealing with Chronic sorrow or you feel you have post natal depression you can get help. Suggested links: beyond blue, lifeline, panda.org or talk to your GP about a referral to a psychologist or mental health worker.