I might be normal. Or I might just be crazy. Or I might be a little of both. I will never be the same again. Unless you can bring him back.

The parent-child bond is one of the most meaningful relationships a person will experience. Parents who have lost a child can often feel that a part of them has died. The despair and pain that follow a child’s death is thought by many to exceed all other experiences. Parents are simply not supposed to outlive their children and no parent is prepared for a child’s death.

The length of a child’s life does not determine the size of the loss. Parents are intimately involved in the daily lives of young children, and their child’s death changes every aspect of family life, often leaving an enormous emptiness. Parents may be less involved in the everyday lives of older children and adolescents, but death at this age occurs just when children are beginning to reach their potential and become independent individuals. When an adult child dies, parents not only lose a child, but often a close friend, a link to grandchildren, and an irreplaceable source of emotional and practical support. Parents who lose an only child also lose their identity as parents, and perhaps the possibility of grandchildren.

When any child dies, parents grieve the loss of possibilities and all the hopes and dreams they had for their child. They grieve the potential that will never be realized and the experiences they will never share. When a child dies, a part of the future dies along with them.

Common grief reactions

Grief reactions following the death of a child are similar to those following other losses, but are often more intense and last longer. Parents commonly experience the following grief reactions:

  • Intense shock, confusion, disbelief, and denial—even if the child’s death was expected
  • Overwhelming sadness and despair, such that facing daily tasks or even getting out of bed can seem impossible
  • Extreme guilt—some parents will feel they have failed in their role as their child’s protector and will dwell on what they could have done differently
  • Intense anger and feelings of bitterness and unfairness at a life left unfulfilled
  • Fear or dread of being alone and over protecting their surviving children
  • Feelings of resentment toward parents with healthy children
  • Feeling that life has no meaning and wishing to be released from the pain or to join the deceased child
  • Questioning or loss of faith or spiritual beliefs—assumptions about the world and how things should be do not fit with the reality of a child’s death
  • Dreaming about the child or feeling the child’s presence nearby
  • Feeling intense loneliness and isolation, even when with other people—parents often feel that the magnitude of their loss separates them from others and that no one can truly understand how they feel

Read more about common expressions of grief and loss.

Some people expect that grief should be resolved over a specific time, such as a year, but this is not true. The initial severe reactions are not experienced continuously with such intensity; rather periods of intense grief come and go over a period of 18 months or more. Over time, waves of grief gradually become less intense and less frequent, but feelings of sadness and loss will likely always remain.

Developmental milestones in the lives of other children can trigger emotions of grief even years after a child’s death. Significant days such as graduations, weddings, or the first day of a new school year are common grief triggers. Parents often find themselves thinking about how old their child would be or what he or she would look like or be doing if he or she were still alive.

Gender differences in grieving

Mothers and fathers may grieve in different ways. One parent may find talking helps, while the other may need quiet time to grieve alone. Cultural expectations and role differences also affect how men and women grieve. Men are often expected to control their emotions, to be strong, and to take charge of the family. Women may be expected to cry openly and to want to talk about their grief. A working father may become more involved in his job to escape the sadness and daily reminders at home. A stay-at-home mother may be surrounded by constant reminders and may feel she lacks a purpose now that her job as caregiver has abruptly ended. This is especially true for a parent who spent months or even years caring for a child with cancer.

Differences in grieving can cause relationship difficulties at a time when parents need each other’s support the most. One parent may believe that the other is not grieving properly or that a lack of open grief means he or she loved the child less. It is important for parents to talk openly about their grief and for each parent to understand and accept the other’s coping style.

Helping siblings who are grieving

Parents are the focus of attention when a child dies and the grief of siblings is sometimes overlooked. The death of a sibling is a tremendous loss for a child—they lose a family member, a confidant, and a life-long friend. Parents are often preoccupied with the needs of a sick child and then become overwhelmed with their own grief when the child dies. The surviving siblings may misinterpret the parents’ grief as a message that they are not as valued as much as the child who died. Learn more about how to help a child or teenager who is grieving. In addition, parents can help siblings during this time of grief by:

  • Making grief a shared family experience and including children in discussions about memorial plans.
  • Spending as much time as possible with the surviving children, such as talking about the deceased child, just playing together, or doing something enjoyable.
  • Making sure siblings understand that they are not responsible for the child’s death and help them let go of regrets and guilt.
  • Never compare siblings to the deceased child and make sure children know that you don’t expect them to “fill in” for the deceased child.
  • Set reasonable limits on their behavior, but try not to be either overprotective or overly permissive. It is normal to feel protective of surviving children.
  • Ask a close family member or friend to spend extra time with siblings if your own grief prevents you from giving them the attention they need.

Continue reading more on how to cope with losing a sibling to cancer.

Helping yourself grieve

As much as it hurts, it is natural and normal to grieve. Some parents find the following suggestions helpful while grieving:

  • Talk about your child often and use his or her name.
  • Ask family and friends for help with housework, errands, and taking care of other children. This will give you important time to think, remember, and grieve.
  • Take time deciding what to do with your child’s belongings—don’t rush to pack up your child’s room or to give away toys and clothes.
  • Prepare ahead of time for how to respond to difficult questions like “How many children do you have?” or comments like “At least you have other children.”Remember that people aren’t trying to hurt you; they just don’t know what to say.
  • Prepare for how you want to spend significant days, such as your child’s birthday or the anniversary of your child’s death. You may want to spend the day looking at photos and sharing memories or start a family tradition such as planting flowers.
  • Because of the intensity and isolation of parental grief, parents may especially benefit from a support group where they can share their experiences with other parents who understand their grief and can offer hope.

Read more on coping strategies for when you are grieving.

Finding meaning in life

Parents report that they never really “get over” the death of a child, but rather learn to live with the loss. The death of a child may compel parents to reconsider their priorities and reëxamine the meaning of life. It may seem impossible to newly grieving parents, but parents do go on to find happiness and reinvest in life again. An important step for many parents is to create a legacy for their child Parents may choose to honor their child by volunteering at a local hospital or a cancer support organization. Or, parents may work to support interests their child once had, start a memorial fund, or plant trees in their child’s memory. It is important to remember that it is never disloyal to the deceased child to re-engage in life and to find pleasure in new experiences.

Every child changes the lives of his or her parents. Children show us new ways to love, new things to find joy in, and new ways look to at the world. A part of each child’s legacy is that the changes he or she brings to a family continue after the child’s death. The memories of joyful moments you spent with your child and the love you shared will live on and always be part of you.

5 responses to “I might be normal. Or I might just be crazy. Or I might be a little of both. I will never be the same again. Unless you can bring him back.”

  1. nayelith moroyoqui Avatar
    nayelith moroyoqui

    I googled neuroblastoma one and i happen to find you after so many links. I seen your baby ronan and i cried. Hes beautiful! I lost my baby to neuroblastoma and he was also ronans age. I get updates on your bloggs everytime you post and i always have to ask myself if i should read them. I always end up reading them but at times i stop myself. I read them and my heart hurts even more. I know your pain to well! I hate that you feel like i do. I hate that many parents share this same pain. I have my other children who also hurt like your kids do. I have every possible emotion. I am happy i found you because i needed someone like you to express yourself to help me understand how i feel. To help me know im not the only mother who feels this way after a loss of a child. Youve given me weight off my shoulders. Thank you so much for everything you do to find the cure to save beautiful lives. I also live in phx and wpuld love to help with anything i can help with..

    1. I’m so sorry for your loss xo

      And everything Phaedra said.

  2. It almost makes me throw up to read this, thinking about what you and the family goes through. To think of any parent losing their child, no matter what the age, is like a punch to the gut now. Fuck the grief. Just fuck it. It’s not right. Thank goodness you are strong and spicy to keep Ronan’s name alive.
    xo

  3. Wow, this almost made me cry! Praying for you and your family today Maya! Much love to you, I’m sorry, xoxo

  4. My children are healthy and here, so there is no possible way that I could ever know an ounce of what you feel…but when I read this,it touched me and I thought of you and your horrific journey without Ro in your arms. “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.”–Washington Irving

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