Through the veil…..

When you think about a sick child…what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe….all religions seem to agree on it….all moral codes…the innocent should not suffer.

But kids get sick and they do suffer.

its reality. call it the fall. call it evil. call it the facts of life.

kids suffer.

So what do we do with that information?  Well we try to alleviate their suffering…..what does alleviate mean?

11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).

CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.

What kind of allowances do we make for children who suffer?  Is it ok if they don’t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?
On the CF floor, we never make the kids do their Pulmonary function tests if they don’t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!

Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF…A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)

I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.

I don’t think we alleviate suffering by pitying the patient or pampering them. I don’t think we teach them self-advocacy and I don’t think we teach them to fight.  That doesn’t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.

Yes Children suffer.

But children suffer more when we don’t love then and treat them with the expectation that they matter enough to us that we will fight for them.

:::off soapbox::::