Most of us know about grief as a reaction to a major loss, like the death of a loved one. I bet a few of us could even name the different stages of grief. I would also wager that many of us, including some of our health-care providers, have not considered grief as a typical reaction to a chronic illness, like reflux.
Grief is what happens to our body and mind when we experience a loss. The experts in the field say that each of us experiences grief in our own way, in varying degrees of intensity, and at our own pace. If you are a parent of a baby or child with reflux, you may need to grieve. Plain and simple.
My guess is that if you have been caring for a chronically-ill child you have already experienced the grief that often accompanies that situation, but may not have been able to acknowledge it because you were not exactly sure what you might be grieving (after all, your child is alive - thank goodness).
Based on my own experience, and those dedicating their careers to researching grief and chronic illness, the following list describes things you may be grieving if you are caring for a child with a chronic illness:
- The realization that your child will need specialized and time-consuming care at least for the short term, if not forever. The major loss here is how you once were able to spend your own time and energy.
The realization that you don't actually have the support you thought you had from your family, friends or co-workers. This represents the loss of an ideal situation.
The realization that no one can tell you when things will get better for your child or your family. In this case, you may be grieving the loss of predictability.
The loss of the ability to plan very far ahead, especially for things that brought enjoyment to you and your family. Related to this, you may also be grieving the loss of normalcy in your family's routines.
The loss of your social life, including the traveling you were able to do before the complex medical situation. Face it, until things get better, no one wants you sitting next to them on a Boeing 747.
The loss of the idea of a perfect medical system in the US (just in case I wasn't the only one who thought that before our child got sick).
The societal expectations of the woman's role in caregiving (the researchers actually came up with this one, and it refers to society expecting women to make the greatest personal and professional sacrifice when it comes to family caregiving).
- The financial reality, especially if one caregiver needs to put his or her career on hold, while at the same time, more money than ever is being spent on medical bills.
This was just a brief list of the things you may be grieving if your baby or child has reflux. In Part II of this blog, I will provide some information that may help you if you do find yourself with feelings of grief as you care for your baby or child.