A Time to Grieve

When a loved one pass away, it takes time to grieve and mourn. When you lose your eyesight, it also takes time to mourn that loss. To learn to come to terms that what you had is no longer yours and accept the reality of what things have become.

You cannot expect a child to be happy about a loss this big. I for one learned to cover up my grievances so that it does not worry my parents. But it is more stressful to have to hide your true feelings to the ones cloest to you, it makes you even more isolated from the ones you love and a wall is put up around you.

Grieving is a process, for some it takes more time than others. The worst thing you can say to someone when their down is don't be down, because no one wants to be, often it's an emotion that the person cannot control.

As a parent, tell your kids you know they are sad and that it will take time to recover. Let them know you support them even in the darkest of moments, it's not easy to face these dark moments with tem, because it means you have to be able to handle that emotion as wel, but this kind of support will help you build trust and support for your child.

Having a kid with Stargardt's means you need to be more than just a parent, you need to become mentally mature to handle negative energy and emotions. Be a tree for your child because that's the only thing you can ever do. They will need to face it themselves, but the most comforting thought of all is to know they don't have to face it alone.

Often Stargardt's patients look too normal that you forget. But for us we never forget, because we live our world in a state of blurriness. We can only accept this is our world and find ways to get around obstacles, but I assure you, we never forget.