You have tried your best to raise your child to be the best they can be. You held them close, kissed away their tears, were strong when they were weak. But you cannot heal them. Chronically ill children, especially those with an incurable disease, are forever sick.
Knowing that there is nothing you can do but put faith in doctors who simply have no idea what they are doing and are guessing at treatment, you feel like a failure. You allow your child to be subjected to all sorts of drugs you would never in a million years have thought you would put into your child.
Drugs that make their face round, drugs that cause cancer. Drugs that make them sick. Drugs that are swallowed, inserted, injected or infused. Drugs that taste bad, that hurt and cause embarrassment. Drugs that burn like fire, drugs that hurt so badly that even you cry when you give it to them.
Then there are the surgeries. Surgeries to fix tears, narrows, blockages, malformations, or just to remove a body part that isn’t working anymore. After the surgeries you go home with your child in pain from surgery, only to return to the state before, never going into remission, never truly healed, never finding relief.
You help your child with homework, school work, struggle to help them learn a language you’ve never learned. You watch as they miss school, fade away from friends’ mind. You watch as everything that is important to your child disappears and your child cries themselves to sleep, not because of the pain or the illness, but because they mourn the loss of a normal childhood.
You change doctors, hospitals, medications, to no avail. Your child never gets better, always has problems and always will. You then realize you will always be a failure. You could not help your child. You could not sacrifice something in order to make them better. No amount of money will fix them. They are forever ill, and you forever the failure.
Only you’re not.