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.
It is important, I think, that they live fully until they die. I believe you think that as well.
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Bonnie
I do indeed believe that living life to the fullest is important, but I get really upset when I see parents having to hide their own feelings and fears because it makes other people uncomfortable to think about children dieing. It's not fair to the parents or the child. And it hurts so much.
DeleteI'm one of those parents who plays the mental game that says, "Well, my kid is different from that kid who died because of X or Y reason, or because my kid's horrible disease has A or B variation, and that'll make her outcome different." In my head, though, I know it's just a game. The reality is my kid has a terrible disease, and no matter how great she's doing now, there's nothing separating her from kids who've died except luck. We've drawn a lucky hand so far, but we know things could -- and probably will -- change at some point. We know she could die, and we do our best to carry on despite that knowledge. What we don't do anymore is share this fear with family, all of whom deny that death is even a *remote* possibility for our daughter, and who act almost offended when we bring it up. Sigh.
ReplyDeleteAnd that is one of the harder things in dealing with a child suffering from a life-threatening illness--having to censor yourself because family, friends, and others think that you are somehow giving up hope by thinking about the possibilities or the probabilities. So much so, we convince ourselves that it is not correct to worry about the what-ifs or to share when it gets really bad. That is why this blog was born, so that I could have a place where I could have my own feelings and not be told I'm wrong to feel them. I don't think acknowledging that life-threatening illnesses kill takes away from life; rather I believe it empowers us to treasure life all the more.
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