Emotions & Relationships

Getting a new diagnosis does not just impact you and your child, it can add stress to the entire family. Siblings, grandparents, and other extended family members may feel the effect. Your child’s medical condition is a unique experience your family will share. It can change how your family functions, both positively and negatively. There may be tough medical decisions, financial concerns, and time constraints that occur. All of these may alter family dynamics. 

How your family is impacted depends on many things, such as your child’s condition and severity, family coping skills, financial means, and other resources. A child with complex medical needs may put extra demands on the family system, often for an extended period. As with any other major life event, your family will learn to adjust and adapt over time.

Parents or Caregivers

Sometimes a new diagnosis can cause conflict or stress in your marriage or other significant relationship. You and your partner may handle things differently. It is okay to let your partner deal with feelings in his or her own way. Your partner is often the closest person to your situation and may end up feeling the brunt of your anger and pain. Remember to be kind and find an outlet for your emotions.

Give your relationship time to deal with the added stress. Use available care resources to schedule some time together as a couple. This can be challenging when time is precious. Now, more than ever, it is important to communicate. Find ways to keep your partner up to date if the other can’t attend an appointment. Think of yourself as a team and try to help one another. View this as an opportunity to grow.

As with your own well-being, it is okay to dedicate time and energy to your relationship. Seek out professional services if needed. Despite challenges, it is possible for your relationship with your significant other to thrive. Some couples find it can foster a deeper relationship. Sharing this experience may help you grow as a couple.

Siblings

Having a child with a genetic condition may also impact siblings. Regardless of age, children pick up on stress or activity around them. They may have questions that are difficult to answer. Be honest and answer their questions the best you can and keep your answers at your child’s age level.

Just as you may experience a range of emotions, so can siblings. It may swing back and forth between positive and negative emotions. Some children will want to help with caregiving tasks, while others may be less helpful or even resentful. It may change over time. The following are suggestions from other families.

• Remember they are still children
• Help identify and model healthy ways to express their feelings
• Seek out opportunities to involve them in typical childhood experiences
• Spend one-on-one time with them when possible
• Give ways to answer questions other people may ask them

Despite the challenges, many adults raised with a sibling with a genetic condition say their experience was primarily positive. They say it helped them acquire patience, perseverance, and compassion. They learned to view people with different abilities as a natural part of life. As they grow, siblings may have questions about their own health or the health of their potential children. Help them to find good resources to answer their questions as they get older.

Extended Family

Grandparents can be affected as well. They can experience their own emotions, as well as feel their child’s pain. They also need good information and support. Educate and share resources with them that are helpful for you.

Your extended family may have questions. It is up to you how much you include family in your inner circle. It is okay to set boundaries. Some people find that extended family is a source of much needed help, while other family members may mean well, but aren’t a source of support at all.

Extended family may want to help but aren’t sure how. Share what would be most helpful. Give them specific, practical ways they can assist, such as helping with childcare, cooking a meal, or running errands. This will allow them to contribute and be a source of support to your immediate family.