Grief & Mental Health
Grief
The five widely known and accepted stages of grief as identified by Swiss-American psychiatrist Elisabeth Kübler-Ross are primarily associated with death and the loss of somebody we love. Although these stages are very commonly experienced by those experiencing such losses, grief and the feelings associated with it can be triggered by any distressing and or confusing times that life can throw at you, including having a child born with Goldenhar syndrome.
Kübler-Ross’ outlined stages of grief include:
- Denial –
- Anger –
- Bargaining –
- Depression –
- Acceptance –
Although this is usually the order in which these stages are presented and expected to occur, as everybody’s circumstances differ, as will their journey through these stages. The stages of grief can manifest at any time, be experienced in any order, and can last for unpredictable periods of time. In some cases, some of the grief stages will not even be experienced at all!
When finding out that your child has a medical condition such as Goldenhar syndrome, a lot of parents can easily fall into a state of denial as a result of the uncertainty and stress that comes along with the diagnosis. During the denial stage of grief, you may develop a feeling of detachment from not just your child but your entire situation. In this case, such feelings commonly stem from confusion and a sense of dread for what is to come. When it comes to Goldenhar, the diagnosis is one of many inevitable challenges you and your child must face. Important and daunting decisions are suddenly hurled at you, from operations treatment, and the expenses that result from it all. Truly, becoming a parent of a child with Goldenhar syndrome is incredibly stressful and unrelenting in its continuous challenges, however, feelings such as those described here are quite common and nothing to be ashamed of.
Another consequence of this mounting stress can also be presented by the second stage, anger. Many individuals who have children with Goldenhar and other similar complications have expressed the distress they initially struggled to tackle and how easily that can evolve into feelings similar to anger, rage and disappointment. These feelings can arise for a multitude of reasons, examples include mothers feeling as though they deserve or should have had a “Normal,” baby, not doing anything to sabotage their child’s health or development during pregnancy, in turn isolating themselves from and cursing the world for the injustice. Alternatively, other parents, both mothers and fathers, will place the responsibility and blame for their baby’s condition onto themselves, regardless of whether that is at all theesable or realistic. Despite the different scapegoat(s), these parents are also prone to similar defence mechanisms like isolation, resentment and shame.
Unfortunately, the difficulties and emotional turmoil do not always end there, and many will also be dragged through the bargaining stage. During the bargaining stage of grief, individuals will usually become increasingly unstable in their emotions regarding their situation if it fails to improve. Identifying the transition from anger to bargaining, if that is the order in which they are experienced, can be seamless and difficult to identify. However, as the name given to it implies, the bargaining stage involves the individuals who are grieving, in this case, parents, beginning to fight and question the diagnosis/treatment that their child has been given. Stemming from the desperation for a sense of normality, you, like many others, may begin to plead with a higher power, with doctors, surgeons, anybody who will listen, and beg for them to cure your child, to make your situation more bearable. In addition, it is very common for people in these types of situations to perform extensive research on their child’s new condition in an attempt to find a solution or a second medical opinion that they deem more desirable and optimistic. In these cases, parents do not rely on medical professionals already aiding their children, usually because their solutions are not considered effective enough.
Depression. It is identified as grief’s fourth instalment; if any are to be experienced, this one is the most common. This stage is exactly what it claims to be. Throughout its typically lengthy duration, all of the previous feelings and struggles associated with the other stages amalgamate and intensify. During this period, you can expect a significant increase in mood swings and emotional turmoil. To battle the fluctuation of emotions for such a long time can in itself worsen other already-existing symptoms such as exhaustion and insomnia. As Much as they have previously, during this stage, parents will continue to grieve the “Normal child” they never received. By this point, with all options and hopes for them to have that normal experience exhausted, the grief and upset caused by the failure will only intensify.
Luckily, as tiresome and tempestuous as the journey through grief may be, you can find comfort in knowing that eventually, it will begin to subside. Many parents during their process of grief can not begin to comprehend ever entering a state of acceptance, despite this, once every fight for a different reality has ceased, you, for better or worse, are forced to concentrate on the bigger picture. With that broader perspective, most parents of children with Goldenhar can begin to adapt to their situation as opposed to rejecting it as they had done previously. Eventually, you will also find that although it may have felt that way previously, this painful ordeal is not one you need to combat independently. Plenty of people can share and assist you with the burden including family members, friends, medical professionals, and of course, us!
Regardless of your preferred support network and the struggles you are facing, there is always a light at the end of the tunnel, and we at Goldenhar UK are here to support and advise you in any way we can, whether the questions are yours or on behalf of another.
Written by Elisha Hall