the nest

the nest

Friday, January 9, 2015

Who decides?

A New Year...  2015 is the year to just do it.

Sitting here at my computer with my HappyLight and my coffee I'm having moment of nostalgia.  Seeing posts on FB about sledding being banned as I'm watching the snow fall out my window makes me sad and annoyed.  More and more I find myself thinking "back in the day," or "when I was a kid" or even "when my kids were little".  The decision makers, national and local, seem to be more and more confused about what their jobs are.  We can't possibly make laws that keep people safe from guns or starvation, but you better not let your child play alone in a park or go sledding.  We will also make all medical decisions for you and your children too.  I'm really troubled by two stories in CT lately.  I'm all about getting good medical care for you and your children, but when the state begins to take children away because a parent (or older child) wants to make a choice that they disagree with, it's a little scary.  A frightening slippery slope.

When I started typing this morning, I hadn't intended to go this direction, but clearly it's what is on my mind!  The current story about the 17 year old with Hodgkins Lymphoma is so troubling.  I'm not making any judgements about whether she should or shouldn't have chemotherapy, but the idea that she has been removed from her mother's custody and is being forced to have chemotherapy against her will is very troubling to me.  Have they consulted alternative medicine practitioners?  While chemo is often the treatment of choice, it is not the only choice.  Also, in a few months when she is 18, this young lady will be able to decide for herself.  What makes those few months magical?  Is it worth the cost and trauma to "force" her to undergo treatment that she does not want?  Really difficult decisions, but not ours to make.
The other story is the one surrounding a very sick little boy.  Jaxon Gilmore is medically frail and while he has a Grandmother and other family members who are willing and able to care for him, because there has been some disagreement about his care the state has taken custody.  Again, I don't know all the details of this case, but this is a little boy who is going to die at some point, sooner rather than later.  His extended family wants to care for him and is willing and able to do so.  What is the problem?
While both of these situations are complicated, there is one simple commonality.  Two families have had their ability to make decisions and care for their children taken away from them.  These are not families who have been abusive, who are living on the street, or otherwise need desperate help.  These are two medically complicated situations where the people who should be integrally involved in the making of those decisions have been pushed out.  While it feels sordid to talk about money and children's lives, there is the reality that the cost for litigation and medical care for both of these children is probably enormous and perhaps finding a way to support these families through would be less expensive both in terms of money and emotional/physical trauma.
Again, I will be clear that I don't know all the details of either of these cases, and don't pretend to know what I would do if I were the state or the families in question.  I do know that there appears to be an increasing level of intervention into the most personal decisions of families.  We fight about birth control and abortion, intimate choices that determine when families even begin.  The hypocrisy is everywhere.  "You must have that baby, but once you have it, we aren't going to give you any assistance; you're on your own."
Everyday we hear cases where children have died or been abused at the hands of their caregivers.  Everyday we hear of children who have been shot accidentally or intentionally with guns in their homes.  My cynical side notices that the children who have died due to abuse or neglect are often from families who are torn apart by poverty, drug abuse, etc...  They have often been on the radar for a long time.  There is no money to be made from helping these children.  The children killed by their parents or caregivers guns?  Terrible tragedies, but we couldn't possible strengthen gun laws or even require safety equipment on guns that would make it impossible for many of those accidents to happen.  That wouldn't be right.  The gun lobby would also be pissed and maybe take their money elsewhere.  Children from loving families who are making alternative decisions about medical care?  How dare they!  We know what's best and we will make the decisions.
Parents being arrested for letting their children play in a park, sledding in public places being banned.  What's next?
I think back a few years to when Jeff and I made a decision "against medical advice" for one of our children.  We were confident in our decision and the Doctor who didn't know us or our daughter from a whole in the wall had us sign all kinds of paperwork and made dire warnings that we wouldn't be able to get care at that particular hospital if the situation arose again.  I guess we are lucky that custody of our child was not taken away from us.
Who decides "who knows best"?  Our laws should be in place to protect and serve.  To support and guide.  NOT to terrorize and punish.  Families who are making difficult decisions need to be supported and treated with respect.  They need to be an equal part of the decision making team, but ultimately they bear the final responsibility and to have that ripped away from them?  Feels a little too Orwellian for my taste.

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