When we become parents our hearts are filled with dreams and the expectation that our children will live long healthy lives. While your child is still alive, you are frightened and feel everything is out of control, it breaks your heart to see them suffering, and you feel powerless because there is nothing that you can do to fix things. When the time arises and your child does die, you are already worn out by the fight to cure your child's illness and it feels like you have nothing left to sustain you now that you have to grieve the loss of your child.
Sometimes, when you find out about your child's illness at birth, you may have a chance to prepare and even grieve somewhat. More commonly, grief usually hits the same whether it was an illness that occurred later in life or an illness that happened at birth. You take care of your child during their final days, and have watched them slowly lose their grips on life, your child has suffered so much and some families feel that their children should suffer no more. Despite all of this, saying goodbye to your child is still traumatic and a shock.
Like with other grieving parents your world is turned upside down. You have spent so much time caring for your child and now you have to plan a funeral. You no longer have your child to take care of and there is a void present. With some parents there is a feeling of being even more isolated because when their child lived, they had support groups and people to give them hope in their time of need. Now the parents are all alone and are forced to work through their feelings themselves.
You will also discover that you and your spouse (or your child's other parent) grieves differently than you; the both of you may have been united in fighting your child's illness, but coming to terms with the death of your child is a different sort of journey. Now that your child has died , every thing has stopped, you have no one to care for, no battle to fight. It may seem strange to go back to those "normal" activities that other "normal" people do; which seem trivial now that your child is gone.
If an only child has died, all of these thoughts will seem like too much to bear: your parental role no longer exists. Nothing has meaning anymore, and you will feel deep despair and a loss of identity as a parent. Please know that you will always be a parent. Although there will be awkwardness due to the fact that you do not have your child with you, and you may have family or friends that do not understand how to approach the fact that your child is now gone, you are and will always be a parent.
A single parent coping with a child's illness and death may feel that he/she has to bear his/her grief alone, even when family and friends offer help. Please know that you are never alone! There is always someone that can help you through. Sadly there is a vast population of grieving parents and with an almost effortless search you can find someone who understands. You can always find a listening ear here.
While your child has been ill, you will have been juggling, both practically and emotionally, with the daily routines of the overwhelming priority of keeping your sick child alive always in the forefront of your mind. Now you have to give yourself time to mourn the death of your child, to reflect upon the past months and years, and give these life-altering experiences time to settle into the fabric of your being. It can seem less painful to begin another activity: perhaps fund-raising for a charity for your child's illness. This is important and a wonderful thing to do, but it will not replace your need to face what has happened.