When a child is diagnosed with a rare disease like Tay-Sachs or Sandhoff, it can have a huge effect on the whole family. It can signal the beginning of many changes for your child or loved one, yourself, other members of the child’s family, and for relationships. Your plans and hopes for the future may also change as you adjust to your new reality.
Strong relationships, whether between couples, with other family members, or with friends, can provide stability and support. If, at any point, you are unable to see your family and friends, using technology may help your child or loved one connect with the key people in their life.
If you are in a relationship, the dynamics of your relationship may change after receiving a diagnosis for your child. You will be faced with an enormous amount of new information and experience a wide range of emotions. You may need to take on new roles, and you may experience financial and other pressures.
You will both have the greatest insight into your child and your experiences, and so you may find great comfort in supporting one another. As each of you adapts to the changes that follow this type of diagnosis, you may find that there are differences in the way that you are responding. For example:
- Some may adjust quickly, while others need more time
- Some may feel that they are experiencing a loss of control over their situation and future, while others may feel called to action
- Some may need to talk through their experiences and emotions, while others will want to be alone
Feelings of sadness, worry, denial, anger, embarrassment, fear, confusion, guilt, concern, resentment, and shock are normal. Some may feel acceptance, while others will not.
You may wish to discuss some of the following topics within your family relationships:
- How is each of us feeling?
- What impact are the changes having on us, individually and within our relationship?
- What are our individual needs at this time, both practically and emotionally?
As the disease progresses, those diagnosed with Tay-Sachs or Sandhoff disease develop complex needs that often change rapidly. This can present many challenges to parents and other family members. The nature of family life may also change significantly and rapidly, and relationships may be strained.
Regardless of your parent and family structure, it can be helpful to come together to determine the values that are the most important to you. This can guide you through future experiences that you will face together. This exercise can help you to feel like you are part of a team, on the same page, and with similar expectations and outcomes in mind.
Some helpful questions to discuss together could include:
- How would you like to look back and remember this time?
- What would you like it to look and sound like?
- What might help you to feel secure and supported by the people around you?
- What might help you to offer security and support to the people around you?
- What will make you feel proud of how you worked together?