I know a lot of really great parents. They put everything they have into their children. They put their careers on hold, wear the same pair of glasses and blue jeans for ten years straight, move to be closer to the place that is best for their kids. They will lose their house, their friends, their sanity to find a cure or a least a reprieve for horrible diseases. They do it all; reach the wall; and then do more.
And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come. Their child will be saved. Because that is what we are told. Science has come so far.
And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved. Surely, there is a Borneo waiting for us."
And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.
As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility". So when we are faced with the reality that our child is going to die, we can't handle it. That is NOT the way it happens. There is a medicine for everything. Aren't we inundated with commercials everyday stating just that!
So parents sacrifice their lives. Children endure extra procedures and pain. And in the end, they die anyway. Why? Because we aren't told that children die. We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal. But there is nothing abnormal about children dieing. Until modern history, it was abnormal to have all of your children survive to adulthood. But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad. Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.
No parent should have to shield their pain when they need the most support because society can't handle the truth. Children die. They die every day. Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.
Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.