Saturday, 5 May 2012

Special Saturday - Grief

Grief is something people feel uncomfortable talking about and people automatically think of death when they think of grief.

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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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.
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11 comments:

  1. This is so very true - you grieve for the child you imagined and for the loss of what could have been. You do feel alone and guilty for feeling like this but it helps to know that others feel exactly the same way x

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  2. I am going to share this with family now so they can appreciate what we are experiencing. Perfectly put. Thank you.

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  3. Your post could easily be my post! Thank goodness those early days are over. I so do not want to revisit them. I realise that we still have our blue days now and then.... but the gap between them gets longer. So glad to know you, Jane. x

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  4. I never went through this, with both my children there was just a growing realisation that they were different. I really believe it must be so much more shocking when special needs comes out of the blue, and I wish more people realise how hard it must be xx

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  5. A great post Jane. I think the guilt felt for grieving is difficult too. Obviously you are overjoyed he is still alive but mourn the loss of what should have been. I think this is particularly true in your case, and ones like it, when through illness or accident the child you knew has gone. H was meant to be this way, this is how he was born. It must be very hard to come to terms with a child that was once perfectly healthy and developing typically suddenly becoming severely disabled. Thanks for being so honest and sharing something that is so difficult to talk about. X

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  6. Well done Jane. You've described grief in this context beautifully. I so relate to how you think you've got on top of it then something happens, ie another run of seizures, & it all comes flooding back again. It makes the good times seem very fragile but infinitely precious x

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  7. Thank you everyone one for your very supportive comments. It was a hard post to write but I felt it needed to be said.

    It is so important for everyone to know that most people feel the same way, people just don't talk about it. And when it comes to those outside our community I always say I wish they understood but at the same time I don't ever want them to experience what I've been through so they can understand.

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  8. Jane, it wasn't until my first husband died that I even knew what grief was all about. Once submerged in grief, I came to understand that grief is not only about loss through death, but there are so many other circumstances that people experience grief. As hard as this post was for you to write, I think people need to know (like you said). You can help so many others from your story!

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  9. Powerful post - brilliantly put. Thanks for sharing

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  10. Thank you Netbuddy and Cindy for your kind words.

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  11. you are so right on grief it took me a long time to get over the sadness of my daughter having downs,i loved her so much it kept hurting when i thought of all the things she would miss out on,5 years later my 4 year old grandson is diagnosed with aspergers,to top that of 5 years ago my granddaughter is born with very severe cerebly palsy(that made me cry from the bottom of my soul). what keeps us all going God ,he taught me to look at the world through his eyes not the worlds,,,,the world says everything should be perfect,if not poor you,God says in my eyes you are all perfect,im working towards that crown he promises us when he comes back,

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