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Let's Talk About Loss...

It is difficult to comprehend, and then put into words what it is like to become a mother of a complex disabled child. There is many elements of loss, bereavement and mourning that is inevitably felt by a new parent carer, some of which not every parent carer understands straight away, it had taken me almost three years to really accept that there was an element to grief in the feelings I was facing at that time.




The Initial Loss


“How can you possibly feel grief? Your child is there, fast asleep and breathing loudly, you should feel lucky!”


My daughter was born in 2012, seemingly fit and healthy baby girl, it was almost six months later that we discovered this would not be the case. Throughout a woman’s pregnancy you can often hear others ask whether they are hoping for a boy or a girl, “any, as long as their healthy!” is often the response. As a family we had an idea that this child would complete our family, she would be the third and a welcomed edition. Delilah would be my husband’s first biological child, as a blended family he had never experienced all the feelings that come with pregnancy. The excitement, the wishes you uphold for them and the dreams you have about them playing in the park, the hobbies they would partake in and the family fun we would have. Then within an instant, those dreams are taken away. The idea of a child running, playing, learning, developing and following the path a ‘typical’ child was taken away from us. We felt we had been robbed, I felt my husband had been robbed and although she was here with us, she was not what I had promised him and not what I had expected. I was heartbroken for her and for us.

Along with this loss there was a secondary loss, a one we had not even considered. We had lost our lives as we knew them. We were no longer met by our given names; we became Delilah’s mam and dad. We went through the unexpected process of losing our family home to make adaptions for our child’s future, we could no longer sustain two jobs, two cars and a social life, we lost the relationships we had with our other children, we became enveloped in a new world we had never expected to be in.


Processing

Where to begin when processing the pain of this type of loss? Quite simply, you must take this loss day to day. There is nothing specifically that makes enduring this loss any easier, besides allowing yourself in time to process the pain. There were moments when I would feel as if I couldn’t go on, these feelings came with a mass of guilt. How could I possibly feel like that? I sought to speak to someone, counselling to be precise, peer support and understanding. We began, over time, to acknowledge that for all we feared this life for our daughter it did not stop her from becoming a happy child, for all her ailments she was becoming her own character, she was unique and that can be a wonderful attribute.

Processing the loss of our financial stability, our home and essentially our lives, however, was a little more difficult. Although with our daughter’s prognosis was difficult, we could learn to adapt, we did not have a choice after all, but learning to live with the other aspects was quite difficult. For a while we tried to endure the struggle to maintain the life we had and embarking on a new one was not something we necessarily were ready to do. Financial disruption became the central aspect to our arguments and our relationship became strained.


Adjusting


How do you adjust? In all honesty? You just do. I wish I had a guide of understanding of how your thoughts adjust, but over time they just do. Internally, you begin to take a role of a carer. A carer in the dictionary is referred to as ‘a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.’ (Dictionary, 2022). This becomes all you know, the idea of what you once expected becomes a distant memory and you begin to focus on the child you have.

Adjusting to a new home became an exciting prospect in time, we had a bigger home that we could fill with aids and adjust to suit our new complex family’s needs. We would begin to think logically about work, finances and those trivial things that once would consume our days. We were adjusting to all our family’s needs. Over time my partner returned to work, and I would take on the role of Delilah’s full-time carer. We had again, adjusted.


Embarking On a New Journey

We hold dearly on to those ideas we had of our daughter during our pregnancy, not because of a sadness now, but because we can see how far she has come. The understanding and expecting we had been nothing compared to the child we now have. We have embarked on to a new journey of our daughter’s life, a one that is needs led, tailored to her unique way. We know strength as we have never known it before and she has completed our life, as we wanted and as we expected.

The life we now lead is a lot different to our previous. Personally, I am now an advocate for the parent carer world and taking those skills I have learnt from being introduced to the special education and needs world and using them to broaden my understanding of mental health struggles of parent carers. I hope to change the path that parent carers are ‘dumped’ onto and help support them whilst they navigate their own grieving process. Without a previous understanding of your ‘typical’ life when having a child, I could not confidently help support others on their journey. I now have an appreciation for both the life I have lost and the one I now have.


I count myself very lucky to have three children, who I love very much. Tracey x

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