In life we grieve lots of things and often get confused by the feelings we are experiencing. We grieve the loss of a job we loved or friends who move away. Some people grieve the end of a season or the loss of a personal possession. This type of loss is talked about in a light way and people understand and accept it.
Then there is the loss we as parents of children with special needs experience. Quite often it takes a while for us to understand that we are experiencing grief and then as we stand back and look around nobody else seems to realize we are grieving and therefore we receive little support or understanding.
For myself grief started fairly quickly. Cameron was well and healthy one day and sick and dying the next. He survived but was no longer my baby. It was as if the hospital staff had taken my baby and given me a different baby. His name was the same but he looked different, sounded different and behaved differently Very quickly MMM and I were sitting down and discussing what our new future would hold. We didn't foresee grandchildren, marriage or university. Driving lessons, graduating high school or hanging out with mates and leaving home. The future we had imagined as we had dreamt about our son before he was born was gone and we were struggling to grasp the reality. We were grieving the loss of our son and our future.
Everybody was sad and distressed, everybody was grieving but nobody talked about grief. If Cameron had died everybody would have talked about grief and supported the grievers. I'm not saying people weren't supportive because they were and did everything they could to help but people didn't recognize we were grieving and that requires a different level of support.
People kept telling us how lucky we were and I wasn't feeling very lucky. I'd lost my baby, my job, my home and my husband Monday to Friday. I was living a new life full of constant driving, appointments, medical professionals and therapy. I was grieving my life as well as my baby.
The worst day of my grief experience was the first anniversary of Cameron's illness. That was probably the saddest day of my life. I cried and cried and cried - and I was alone. I howled and I rocked, it was very primal and it scared me because these were foreign feelings and they wouldn't stop. It was exhausting. Nobody acknowledged the day and I felt all alone in the world. I was confused that nobody realized what this important day was and why weren't they saying something. I was sad - why wasn't anybody else sad? If Cameron had died I know they would have rallied around and made sure I was alright. There would have been flowers and visits to the cemetery along with other ways to mark the day.
The early years were hard with bouts of extreme sadness, anger, confusion and deep grief. But I was very aware that people couldn't handle the sadness so I would try very hard to be happy and not bring people down. I was grateful that Cameron was alive and had survived so I focused on that to distract my mind as I fought to recreate my new life.
Grief affects you in many ways and it affects all aspects of your life and that is where the confusion lies because it is so hard for you to recognize, let alone everyone else. You experience denial and shock, pain and guilt, anger, depression and loneliness. Things start to improve and you eventually arrive at acceptance and start to create a calm life again when it all happens again but in no particular order. The cycle of grief is unpredictable. I would feel as if I was getting on top of everything only to find myself going through anger, confusion and depression again. And then every time Cameron had a seizure and ended up in hospital it would trigger it all again.
As the years passed by the grief lifted and the things that upset me when Cameron was young stopped upsetting me. I stopped grieving the life we weren't living and embraced the new life we now lived. But every now and then we reach or don't reach milestones in life and the grief creeps back for a visit. It will never leave completely because what happened is incredibly sad and unfair but we have learnt to be grateful and embrace life. We've learnt how fragile life can be and how we shouldn't waste it. We know how important it is to stop and have a cuddle, a hug or a kiss. There is always time for the ones you love.
Grief is confusing no matter what you are grieving and the most important thing is that people accept that grieving is a normal part of the experience of raising a child with special needs. The more people talk about grief and how they have experienced grief the more people will understand and then support others. Grief is overwhelming and parents need support.
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