Chronic Sorrow Syndrome
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Chronic Sorrow Syndrome.

Estimated reading time 9 and a half minutes.

One of the first thoughts to cross my mind after 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 this one a while ago but 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 this 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 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 start affecting parents?

Chnronic sorrow can manifest itself at many points in yours 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:

1. A difference can be noticed at birth when a disorder or syndrome  is diagnosed and that makes your child  ‘different’,

2. Later in childhood if your child develops a difference such as when children who develop austism, or a learning difficulty.

3. 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 difference parents often grieve for:

  1. 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
  2. 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.
  3. 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 Sosrow is essentially the struggle to:

  1. Accept your child’s differences without perceiving them as negative, just different
  2. Accept the changes in your life’s planned pathway, and adapt to the new pathway
  3. Develop new, appropriate expectations of your child.
  4. 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 to get help. Suggested links: beyond blue lifeline or talk to your GP about a referral to a psychologist or mental health worker.

For an appointment with Chris Koletti please email him


ari and me love

  • irene collins
    Posted at 02:58h, 04 February Reply

    Raylene & Joe You two are just the amazing parents Ariel could have ever wished for in her life ahead and you have both accepted her for what she is a beautiful little girl who is going to have the most wonderful life that lies in front of her. The 3 of you are all special to us all as a family and are here to support you with all our strength today & beyond. We are all blessed to have such a beautiful little soul in our family
    Love to you all

    • Raylene Barton
      Posted at 04:24h, 04 February Reply

      Thank you so much Irene we are so lucky we have the family to support us and accept her too. She is very loved xx

  • Cindy @Your Kids OT
    Posted at 09:26h, 05 February Reply

    What an important message this is for parents of children with disabilities. I will be sharing on my FB page.

    • Raylene Barton
      Posted at 00:48h, 07 February Reply

      Thank you so much 🙂

    • Raylene Barton
      Posted at 00:54h, 07 February Reply

      Just checked out your blog Cindy and subscribed! Perfect for me 🙂

  • michelle
    Posted at 22:13h, 06 February Reply

    Hi Raylene I found your blog via Aussie Bloggers. Thank you for sharing your experience so openly and honestly.
    I work as a special ed teacher and I have seen parents have to process and work through CS as their children move through different stages of development. You are spot on when saying that one of the best ways to help with CS is to accept that their child is walking a different path and love them unconditionally every step of the way.

    • Raylene Barton
      Posted at 01:00h, 07 February Reply

      Hi Michelle. Thank you so much. Yes this is such a huge lesson in unconditional love. I will definitely be heading over to your blog now to check out what I can learn from you. Thanks again x

  • Natalie @ Our Parallel Connection
    Posted at 23:18h, 06 February Reply

    thanks for sharing such an intense topic. My daughter was diagnosed with epilepsy at 6yrs old and I remember shedding many tears for what might have been. Now she is 13yrs and has many learning difficulties, I still mourn for her loss(even though she doesn’t know it)… It is my job to be her voice until she tells me to stop… That’s the best I can do for her …

    • Raylene Barton
      Posted at 01:03h, 07 February Reply

      Hi Natalie, yes it is such an intense topic and it was in my drafts folder for a while. I needed to get experience on the topic as you would well know about. I love to meet other mums like yourself who a strong advocates for their kids. Well done, I know it is not always easy x

  • Christine
    Posted at 09:09h, 07 February Reply

    Raylene, your post moved me so much. Your little girl is very lucky to have such strong parents who obviously care so much for her.


    • Raylene Barton
      Posted at 19:43h, 07 February Reply

      Hi Christine thank you so much!

  • Eliza
    Posted at 10:00h, 21 February Reply

    What a beautiful little girl you have! I cannot imagine how hard the last year has been for you guys, but I think Ariel is a very lucky girl to have you guys as her parents.

    You’ve tackled such a hard topic with courage, strength and grace. I’ve been reading your blog for the last half hour and there’s so much thoughtfulness and wisdom.

    I think every parent could benefit from reading your blog.

    All the best,


    • Raylene Barton
      Posted at 22:37h, 21 February Reply

      Thank you Eliza, I have decided to embrace this journey with open arms. There are some bad days of course, and there will be more. I have accepted that. I really appreciate your kind words of encouragement. Its comments like these keep me going. Raylene x

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