Some years ago now I was introduced to a book called Yearning For Normal by Susan Ellison Busch. It’s a personal tale of her life with her son, Michael, and the challenges she faces in dealing with her Chronic Sorrow as a result of his disability. It was the first time I had come across the term, Chronic Sorrow and the first time I felt I had an explanation or at least a term for the feelings I carried around with me.
If you check out the website, www.chronicsorrow.org it gives you a great description of what it means to live with chronic sorrow. The excerpt is below.
“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. 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.”
Sometimes called a “living loss” 1 because it doesn’t go away, chronic sorrow may stay in the background while the family does their best to incorporate the child’s care into their usual routine. If a medical crisis or event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the profound sadness.
Parents or caregivers of premature babies, children with diabetes, sickle cell disease, spina bifida, epilepsy, muscular sclerosis, and developmental disabilities may have to cope with chronic sorrow. (I would say that that list is by no means comprehensive) Caregivers of family members with Alzheimer’s disease or other ongoing illnesses, as well as couples experiencing infertility, may also have chronic sorrow.”
The idea of a Living Loss is so interesting to me. I lost my Dad in 2009 to cancer and I experienced grief in the most profound way. Then, when we had Freddie and in the years that followed, I experienced and still do, waves, an ebb and flow, of grief, anger and sadness all mixed in together with hope, happiness and belief. Due to my experience with my Dad dying, I knew it was grief that I was feeling but I didn’t know what to do with it. It’s ongoing, there is no end to the situation as a whole.
It was and is at times similar to depression but it’s something that you learn to live with. The profound sadness, anger, frustration and guilt becomes your new norm. And, because it’s the norm, you learn to laugh, have fun and experience joy all at the same time.
It was first described in 1962 by S. Olshansky, Director of the Children’s Development Centre in Cambridge, Massachusetts, USA. If you do look him up and read any of the original report, please bare in mind it was written in a very different era and as a result, uses language and terminology which is at times although medically correct, also very upsetting.
Chronic Sorrow. You never quite know when it’s going to hit. I’ve suffered with depression in the past and had methods to help me through and ways to cope but this is different. Some of the coping mechanisms are the same like counselling, mentoring and perhaps a low dose of antidepressants but I knew that I needed ongoing tools to build my resilience. It’s important to recognise the difference between depression and chronic sorrow to make sure you access the right type of support and treatment if needed.
After a lot of trial and error and different methods of support, I can now keep going without too much turbulence and I have a tool kit to turn to when it hits again. Plus I’ve worked a LOT on mindset. On my mindset.
For the past two years I have been running a live workshop called Building Your Emotional Resilience – The Ebb and Flow of a SEND Parent. If you’re in the UK, I’m running this again on Wednesday April 3rd in Solihull in the West Midlands. That’s 2019 if you’re reading/listening to the podcast in the future. In it I share the tools and techniques I use on an ongoing basis to support my mental health and build my resilience to enable me to keep going. There is no short term fix because although caring for and loving a child with needs is forever and will not change, some of the elements around that situation can and do change. The world does keep turning and circumstances do change and develop. In the beginning we were told not to hope for much. Freddie most likely wouldn’t walk or talk but luckily we chose to focus on the possibilities and he has progressed further than we imagined. Often, a lot of the stress comes from feeling out of control. Especially if you are anything like me. I really do like to be in control, just ask my husband. So, I’ve learnt to work on the things I can control which really helps.
If any of this sounds familiar then you will also recognise that you can be bobbing along fine, enjoying time and experiences with your family and your child with needs and then BAM! Something triggers it for you and you sink again. Some examples of mine are, the realisation that my child might always needs help with personal care and wondering how that will be as we both grow older and milestone delays. Milestone delay is an area I mostly feel at peace with now. Freddie is on his own trajectory and as long as we are always moving forward I am ok with that. Except when I’m not of course. Times when I see the cohort of children he should have been at the local school with, experiencing life in the way I thought he would and doesn’t. Us as parents experiencing his growth into a young man in the way we thought we would but will not. Sometimes it’s not being able to book in respite and then realising that the support network we have won’t always be there. This builds fear of losing any time out and freedom and head space. It’s always the what if’s that do it.
Mindset is essential to coping. It takes practice and continuous learning about yourself and your circumstance to pull through and keep moving forward. Practicing the growth mindset rather than the fixed mindset gives you hope.
I have spent many years now practicing being in the now, living in the moment and it’s something I encourage everyone who attends my workshops to do. The past can’t be redone, it’s only memories now. The future is unknown, which can bring fear, so living in the now is the most calm and effective place to be.
I’m sure you find the same, that when you attend meetings for your child, most of the conversation is focussed around what they cant do, where they are falling behind and what interventions need to be looked at. Continuous conversations focussing on the negative is overwhelming and can bring sadness. If you are lucky, you meet the odd professional who focuses on the positives. They focus on what your child can do and how to move forward with the aspirations you have for them and perhaps aspirations they have for themselves.
I’m going to be talking more about Mindset, both fixed and growth and what that can mean for parents of children with Additional Needs in next week’s episode of the podcast. The concept is the basis for my newest workshop and it’s fascinating. It helps bring clarity to how you feel and respond to certain situations and even how your child or children feel and respond to situations. There are clues there on how to help yourself and those you love.
Knowing myself, my husband and all the parent carers I’ve met both personally and professionally, I know that Chronic Sorrow and grieving a living loss is a reality that we have to face and one which needs support and understanding to cope and live with. It’s so important to surround yourself with a community of people who understand and can offer uplifting support.
My goal is to build that community of parent carers to offer mentoring and the tools to become empowered in advocating for your child and living your best life when managing the challenges that come your way. There is no preparation for this life and no one size fits all way to build yourself up but one thing we can do is come together.
As ever, if you would like to get in touch, tell me what you think of the Podcast, send in a question for it or just to say hi, drop me an email to firstname.lastname@example.org or PM me. Thank you for listening and I’ll catch you on next week’s episode when I’ll be talking more about Mindset.