Ingrid and her fourteen-year-old son both have post-COVID. After more than four years, they have learned to live with the limitations. “We no longer always get very sick after exertion, but we still have to think about what activities we do and how we plan them.”
Investing in understanding
“In the years that our son has been ill, we have mainly focused on his social-emotional development. We have invested a lot in creating understanding. His friends from primary school have accepted that he has limitations, he still sees them. He also has social contacts at his current school, special education cluster 3, and at day care. Those children understand each other, because they all have a limitation. He is now more satisfied with that small, functional life. But especially during a relapse, the feelings of frustration and loneliness play up again. Then he is tired of resting and sad that he cannot go and stand where he wants like other children.”
Hardly possible
“With this disease, you have to deal with many different disciplines, which do not always work together. In that web of opinions and interests, you have to be very assertive as a parent to achieve what is best for your child. In the long run, you actually become a kind of expert in the field of post-COVID. Many professionals find it difficult to deal with that. It often involved hard work and fighting. If you yourself also have post-COVID, that is almost impossible. Fortunately, I have a very strong and communicative partner. We also received mental support and practical tools from C-support. They have the expertise in-house and are aware of the latest developments. For us, a valuable sounding board in dealing with the disease and with the various disciplines.”
“Post-COVID has made our world a lot smaller. That means a lot of loss, unfortunately. Of contacts, but also of the life we had in mind. You have to learn to accept that. You have to completely reshape your life and learn to be satisfied with other things. Of course, that also has a huge impact on the rest of our family.”
