Emotions & Relationships

Emotions

If you are reading this, your child, or someone you know has been diagnosed with a genetic condition. Life may be taking a different path than you imagined. Some children are diagnosed prenatally or through newborn screening. Other children are identified later, after delays or concerns appear. Not every genetic condition can be diagnosed. Some may not get a diagnosis, because not every genetic condition has a name.

Regardless of circumstances, you may feel a range of emotions. Not every person feels the same thing. There is no right or wrong way to feel during this time.

Your emotions may change from day to day, or even hour to hour. Depression, anger, fear, and uncertainty are just a few things you may feel. These are strong emotions, making it difficult in the beginning. Each person’s reaction is unique. It’s not unusual to feel like you are on an emotional rollercoaster at first.

One thing to remember is that a diagnosis doesn’t change who your child is. It is important to still celebrate everything in their life. Over time you will figure out how to play, have fun, and how to laugh. You will be able to move forward and find joy again.

Feelings of Grief

You have experienced a loss if your child’s condition impacts, limits, or changes your dreams for them. It is okay to allow yourself time to grieve. The way each person experiences grief is unique and can be scary and overwhelming. There are typically thought to be five stages of grief. They are denial, anger, bargaining, depression, and acceptance. You may go through all or some of the stages. You may experience each stage in a different order, more than once, or go back and forth. You may not recognize that what you are feeling is grief or understand why you’re feeling this way. Friends and family may not recognize your grief. This can intensify feelings of being alone.

Grieving is a process. Each stage can have different symptoms, and they will vary from person to person. For example, denial may include feelings of disbelief or numbness. Anger is often the result of feeling powerless and may cause difficulty with close relationships. Depression can include feelings of sadness, hopelessness, or irritability. Grieving is a process. No one can predict exactly how long it will take. Sometimes a crisis or event can cause you to experience the stages all over again.

Knowing that your reactions aren’t uncommon may help. You will need to find new ways to manage these feelings. Recognition of what you are feeling and why is the first step. If any of the emotions become too much, it is okay to seek professional help. Suggestions of ways to find support are identified later in this chapter, but your doctor, a trusted friend, or clergy member may be a good place to start. Acceptance is about coming to terms with a new reality. It doesn’t mean you like it, but you find a way to manage.

Feelings of Guilt

You may experience feelings of guilt about your child’s diagnosis. You may wonder if you could have prevented your child’s condition. You may feel you are responsible. You may question how you didn’t know your family history. Some people may experience guilty feelings about what was done, or not done, during pregnancy. Others may feel frustrated because they can’t fix what is wrong. These are common concerns and feelings.

As you move through initial diagnosis to managing your child’s condition, new challenges may set off new feelings. Having a child with medical challenges can be overwhelming, and the need to understand “why?” can be a strong feeling. Learning more about your child’s condition may reduce the stress associated with feelings of guilt.

There are doctors and counselors who specialize in genetics. Genetics is the study of how traits such as hair color, height, or risk for disease are passed from parents to their children.

A Geneticist or Genetic Counselor can tell you more about your child’s specific genetic conditions and how they occur. They can help you understand your family history and its impact on other family members. They may also help you identify what treatments or specialists work best with your child’s genetic condition.