Parents hope that their child will live a long, healthy life full of milestones to celebrate. With or without a diagnosis, you may find that you are grieving the loss of or threat to that hope, both for your child and for yourself as a parent. This kind of grief is different from what we tend to associate with loss; the concerns begin as soon as we recognize that a loss may occur. Anticipatory grief means grappling with and grieving the losses of what has been expected, long before the future—whatever that will be—unfolds. It imagines all the losses along the way. Fear, anger, sadness, irritability, loneliness, guilt and anxiety are all aspects of anticipatory grief.

If there is no clear diagnosis or prognosis for your child, anticipatory grief may include imagining the moment in which you might have an explanation. You might think about how you will react and absorb the news. This may bring you comfort, or even greater sadness and fear.

Anticipatory grief may trigger a desire to talk or to withdraw. It may manifest itself as physical problems such as sleep or memory difficulty, headache or other physical pain. It may include a mental rehearsal of your child’s death and the hours and days following the death. It may include a need to engage in immediate decision-making around preparation for end of life. It could also take the form of avoidance of the challenges that lie ahead.

Seeking help when you are experiencing anticipatory grief—soon after your child’s diagnosis, at a change in baseline, when uncertainty is heightened—may help you build coping strategies. Taking care of yourself physically and emotionally is in your, your child’s, and your family’s best interest.

You have been navigating your grief for a while now, perhaps adjusting to a different life than you had anticipated. Hopefully you are learning to balance sadness for what you may never experience with your child, with moments of joy and pleasure in them and their accomplishments. 

At the same time, things about your life and lifestyle may change as your child changes; for example, you may have to make modifications to your living space or spend more time traveling to see specialists. At these times you may realize that the image you have had of what you would be doing as a parent is quite different from the reality, and you may experience new waves of grief.  This is entirely normal, because grief is often non-linear. It may show up in different ways at different points in your journey, perhaps after you have felt calm and accepting for months or even years. There is no set path, or right or wrong way to grieve. It is important to understand that experiencing anticipatory grief is common and natural for parents of a child with medical complexity. It is also important to understand that your experience of it will be personal. This means that others around you will grieve in their own ways, too.

Whatever grief that you and others around you have been feeling, it is likely to heighten if your child’s condition does not improve or becomes more complicated. A decline in their baseline can present thoughts and images of a new reality, of loss that feels hard—even impossible—to bear. Some caregivers turn their fear and anger inward and find that they are very hard on themselves. This may feel like the least harmful way of dealing with feelings, but it usually is not very helpful. Rather, acknowledge that you have been adapting and coping all along, and be assured that you will be able to do so now. As before, seeking help may help you build coping strategies.