Caring for a child with a rare or undiagnosed condition takes a toll on the entire family, including siblings. It can affect everyone in the family physically, mentally, and emotionally. Multiple medical appointments, worry, and fear can consume your time and energy, leading to exhaustion, stress, and uncertainty about managing other family responsibilities. It’s a lot to handle.
It’s not unusual for parents of children with rare or undiagnosed conditions to feel drained and find that they may be downplaying or ignoring the impact your child’s condition may have on your other children. Siblings may feel resentful about the time, energy, and focus you naturally have to spend on their brother or sister. And it can leave parents feeling guilty.
Having a child with a rare or undiagnosed condition can change family routines and dynamics, confusing their siblings. They may be fearful and anxious about what is happening with their sibling. When dealing with a child who’s ill, it’s only natural that you’re preoccupied and worried. While you can’t change your situation, there are some ways you can support your other children to make it a bit easier.
5 Ways To Support Siblings
- Have Honest Conversations With Each Child
The thought of explaining an illness to your children might seem overwhelming, especially if you think your child won't be able to understand what is happening. However, you must talk with your children openly and honestly about the situation. Determining what to share will depend on their age and developmental level.
Keeping the information from your children can contribute to confusion and increase their fear.
- Schedule One-on-One Time With Each Sibling
Of course, when you have a child with a rare or undiagnosed condition, the situation requires that much of your time and energy remain focused on your sick child. Yet, you also want to do everything possible to stay connected with your other children. One way to do this is to schedule one-on-one time with each child. Often, that’s easier said than done, but it’s crucial to follow through on the time you’ve planned with your other children.
Keep in mind that sometimes siblings may use this time to complain or even act out. Acting out may be a sign that they need more attention and love. So be patient and give them the room they need to express themselves and just be with them.
Remember, it’s okay to laugh and have fun. Encourage silliness and focus on things that bring smiles to your faces. It may be just what you both need.
- Encourage Siblings To Keep Track of Their Questions and Feelings
Your children may have a lot of questions. Consider giving older children a special notebook or journal and encourage them to fill the journal with their questions, thoughts, and feelings. Then, if they share, you can discuss what’s on their mind during one-on-one time.
- Support Sibling Relationships
With all the attention a sick child receives, siblings can become resentful, and rivalries grow. Make an effort to help your children maintain their bonds and support one another by seeking ways to keep them engaged.
For example, find joint activities your children can do together. It could be craft projects or family movie nights—any activity that includes all of your children.
Often, ill children get showered with gifts to help them take their minds off what’s happening. But unfortunately, when your other children don't receive the same treatment, sibling relationships can be fractured. So, remind relatives and friends to support all children, and whenever gifts are involved, ask that all children receive something special.
- Try To Keep Life “Normal” as Much as Possible
Try to maintain continuity with equal treatment for all your children. Stick to your existing rules and enforce them, minimizing jealousy and guilt.
While it’s important to keep siblings involved, try not to rely on siblings too much as caregivers before they’re ready. Siblings often look back and feel that they had to grow up too quickly. Instead, accept help so that your children can stick to their typical routines whenever possible.
Staying Positive
It’s easy to feel guilty for not being a perfect parent to your healthy children, but it’s not helpful. You’re doing a great job! Recognizing the needs of your children will make a difference to them. Also, it helps to remember that you are building memories that last a lifetime.
Support and Hope
Parenting a child with a rare or undiagnosed condition can be daunting. Fortunately, resources are available to help. In addition, the dedicated team at TGen’s Center for Rare Childhood Disorders (also known as the Center) and others continue their groundbreaking research to find answers and develop treatments.
Through the generosity of donors, the Center provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children. Your donation will enable the Center to continue its groundbreaking research leading to discoveries that mean a better future for children with rare childhood conditions. Even simply sharing the message with friends, family, and associates can help.
