Ally Cadence Trust for Spinal Muscular Atrophy
0800 23 43 762
0333 44 43 762
" Supporting families affected
  by SMA Type 1 "
" Supporting families affected
  by SMA Type 1 "
0800 23 43 762
0333 44 43 762
0800 23 43 762
0333 44 43 762
" Supporting families affected by SMA Type 1 "


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The death of a child is the most devastating experience a parent can face.  No parent expects to outlive their child and many feel that is against the natural order of life to do so.  The sense of loss and despair can be so overpowering and overwhelming.  Many parents with a terminally ill child will begin the grieving process at diagnosis, grieving for the future they may not have.
You will go through a journey in the way in which you grieve, but the rate at which you travel this journey changes from person to person.  There are believed to be 5 stages, but you will not necessarily travel them in the order shown below, nor spend the same time at each stage.  You may flit from one stage to another, each one lasting from minutes to hours, days or even months.
Denial is the first stage of grieving and a very common reaction to the death of a loved one. It is a natural defence mechanism that kicks in during the immediate shock and helps us through that inititial time period, giving a form of 'mental protection.'  You can feel very lonely and confused and wonder how you can go on. You feel like you are moving about emotionally through the days.  
It can take days, even weeks, to fully absorp what has happened, and as you start to accept the reality of that the denial will fade and your feelings will surface.
Anger and irritability are very common reactions in grief, and tend to appear as the feeling of denial wears off. This may also be the result of tiredness and exhaustion due to sleep disturbances.
There is so much intense emotion is has to be deflected somewhere.  For most people the pain we are feeling is reflected as anger, to friends, family, doctors, complete strangers, even inanimate objects.  
Before you lose your loved one you may find yourself bargaining and be willing to do anything if they can be spared.
After a loss we sense a need to regain control and start questioning ourselves, should we have gone to hospital sooner?  Should be have got a second opinion? Should we have done things differently?
We are surrounded by guilt  "what ifs" and "why us."  We believe we should have said or done things differently and may have many regrets.  Yet self reproach and guilt are the most important human reactions following something so traumatic.  It is completely 'normal' to feel this way.
Feeling very empty, we enter an emotion on a whole other level.  We feel full of intense sadness and regrets. Increased anxiety and fear is very common and the world suddenly seems unsafe.
This stage feels like it's going to last forever and you may feel yourself withdrawing from social surroundings and wondering what is the point anymore.
Depression is very normal after the death of someone close, and should not be seen as a sign of a mental illness but more a natural reaction to the whole grieving process.
Acceptance occurs towards the end of the grieving process.  We know that life will never return to what is was before we lost our loved one, but we learn to accept this, and accept that life has changed.  We find ourselves forgiving and remembering the good times.  We find a way to move forward and remember the child.
Grief is a very natural reaction, never be hard on yourself for the way you are feeling.
It is the experience of grief that helps the healing process and we need to accept that this may take some time, from months to years.   Although this is something we never truly get over we do become stronger over the grieving process and realise that we can carry on, life does have a purpose, and we don't let grief consume every day of our life.
Although we will have our bad days and poignant memories we have made it through this process to get to a point where we can remember and talk about our child without antagonising pain and tears.  

If you would like to talk to someone at the Ally Cadence Trust please do get in contact via our freephone number.
Other Organisations that can offer help and support;
Cruse - A national charity set up to offer free, confidential help to bereaved people.  
The Compassionate Friends - A charity that supports bereaved parents and their families
Counselling Directory - Get connected with professional support

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