My firstborn is a healthy little boy. He loves to play soccer and the guitar. But what he loves the most is spending time with his little sister. When our little girl was diagnosed with severe eczema, we did not realize the impact that her chronic condition had on our son.
I used to spend hours in doctor’s appointments and caring for his sister. He had to become more independent because Mom did not have the time to deal with everything at home. He had to go to birthday parties with his friend’s mom, or do the homework by himself with no help because his mom was busy bathing and applying treatments on his sister.
We may not have noticed right away. I was so tired and frustrated that we did not see that he was not as happy as usual. His smile was not the same; he was feeling left out and hurt. My daughter’s chronic condition changed our routine and prevented us from doing the activities we used to do as a family.
As soon as we started to see and feel his changes, we decided we had to direct more attention to him. But we did not know how. It was then when we decided he should start seeing my daughter’s psychologist as well. She gave us a lot of tools to help him participate in his sister’s care and also how to drive some attention to him in specific situations.
When a family member is dealing with a chronic illness it is a great moment for increased empathy, responsibility, adaptability and creativity. This is why I would like to share some of the things we did as parents to help our son to cope with his sister’s condition:
Do not let siblings be the caretakers. Make them part of routines, doctor’s, or therapy appointments when possible. This is a good way for them to understand what their sibling is going through.
Usually, the sibling who is “sick” gets a lot of our undivided attention and time. But you must take some time out for your “non-sick” children, too. This helps them know that they are still important to you. I know sometimes it’s hard to find this a space for this, but it can even be a walk through the neighborhood or even a ride to the grocery store.
Help your kids to talk about their feelings, even if they are not positive. Validate them when they do open up. Also express yourself in a way they understand that all the family is going through a lot, and you are there to support each other through the situation.
As a parent of a kid with a chronic condition, I have felt guilty about enforcing rules, but I have learned that not doing so generates more chaos. Structure helps children know what to expect, and this makes them feel safe.
I know that when one of your kids needs more care and dedication, it is hard as a parent to keep doing some extracurricular activities. However, it is important to find hobbies in which everyone can participate. Being able to enjoy the fun things in life can help the family cope better.
Stay informed and give yourself credit for all the hard work you and your family have done and the resiliency you have developed in your family.
We have seen a lot of progress so far. He knows we love him and we care for him. He also knows that his sister has some restrictions, but it does not mean that we love her more.
Feel free to share your stories or any advice!