I recently read a blog written by Charlie Beswick, the CEO of SEND support charity Our Altered Lives (1), entitled ‘It’s grief, Jim… but not as we know it!’ The title only makes sense if you are familiar with the TV programme Star Trek, as a riff on a famous line that has become synonymous with the series (although it was never actually said in any episode!).
Charlie is referring to non-finite grief, which is a sadness that is continuous and ongoing.
It’s a melancholy we may feel when our child with additional needs doesn’t meet their developmental milestones, while all our friends’ children of a similar age do.
For me it started with delayed sitting, and continued with delayed speech, delayed walking, and delayed potty training (believe me, that was a long delay!). It didn’t help that in my friendship group, three of us gave birth to baby girls on the same day. We started out in motherhood together, but my experience has not been as ‘mainstream’ as theirs.
Looking back, I can see how this non-finite grief and continual disappointment has repeatedly reared its ugly head over the past three and a half decades. While my friends’ children took their SATS, their GCSEs, their driving tests, went travelling, got a job or left home to go to university, mine did not.
Do I love my daughter any less because of this? No.
Have I been spared some pain that my friends have experienced? Absolutely!
Do I still have to check in on basic hygiene, read letters, arrange appointments, check finances, and worry about her life beyond my own (and the impact it has on her siblings)? Yes, I do.
The authors Elizabeth Bruce and Cynthia Schultz wrote about non-finite grief in 2001 (2). They explained that although non-finite grief may occur after a specific event, the sense of loss is continuous and ongoing, perhaps for the rest of a person’s life. This loss is made up of many factors, but key elements are a loss of certainty or expectation, of hopes or dreams. The sense of what is ‘normal’ is shaken, and people may feel disconnected from the ‘mainstream’ of experience. There may be a sense of losing control and a feeling of powerlessness. It may be compounded by the fact that, unlike bereavement, it is a loss that is not recognised by most other people.
That last sentence is significant, I think. How can you grieve a child you never had? How can you grieve a child that is here?
I believe that non-finite loss is a common experience of parents and other family members who have a child with additional needs. It is a loss which in some ways prevents the normal expectations of a parent being realised. There is grief at the loss of the child they had hoped to have.
It is non-finite because the loss is ongoing. You may be living with a toddler with Down’s syndrome, a pre-verbal autistic child, a teenager with cerebral palsy, or one of countless other scenarios. As a result, your (subconscious) aspirations for your child clash repeatedly with reality. While the loss cannot be changed, it is helpful to understand and acknowledge that the grief being experienced is a completely normal response.
Charlie writes in her blog, ‘Imagine if someone had told me that it is perfectly normal to miss the life you never knew, while still loving the life you have.’ Well, you don’t have to imagine, because I’m telling you now, and because I want you to be kind to yourself. It’s OK to feel sad. It’s OK to cry. These are completely normal responses. It’s OK to grieve while still enjoying the life you have. It’s part of the process which builds emotional resilience.
.
(2) Elizabeth Bruce and and Cynthia Schultz, Nonfinite Loss and Grief: A Psychoeducational Approach (Jessica Kingsley Publishers, 2001).
Help us support families today
At Care for the Family we support couples, parents and those who have been bereaved. If you would be able to make a one off donation to support our work, we would be very grateful. Thank you.
