Saturday, December 8, 2012

Judging moms? I'm judging the media


As I am starting chemo this week (week 4, round 2, day 3) I am having major mom empathy.  I passed a curly haired girl moving her IV on our floor this week.  She looked out of place here.  I think she knew it too.  Based on the kind of lost expression on her and her mother's face I suspect they have only recently learned of their cancer.  My emotion took me by surprise.  I felt so bad for them.  Which is strange considering that we are on this floor for the same reason.  I rarely feel bad for us... sometimes it can even feel a bit normal.  Cancer, chemo, get it done, go back to our lives.  This family will hopefully get their groove too, but for now I just hope these first weeks go by quickly.  It seems learning your child has cancer is one of the worst parts of this whole process.

So you may have heard about this mom: Mom takes girl with leukemia out of the hospital.  Read the article, but withhold your judgement.  Chemo is crazy dangerous in and of itself.  And this poor girl also lost a large portion of her arm.  The ignorant comments by the police chief are rather infuriating.  I don't know this woman.  She could be some sort of horrible being, but I suspect her and her daughter are living a real nightmare.  She didn't know how to stop it, because saying "please stop it hospital" is usually not an option.  So she left.  I realize she could have done a few things better, but the media portraying this mother as an asshole is likely inaccurate.

Mass media is the worst.  I think we can all agree on that.

Here is article #2 I would like to share with you: Parents stopping chemotherapy for Michigan 10-year old cancer patient is 'death sentence', state argues in court appeal.  Unbelievable.  What a poor use of the laws that are supposed to protect children.  The child himself said he wanted to die.  Many parents are not afraid of the death as much as we are afraid of the suffering.

Can anyone love a child more than a parent?  I would trust most parents seek to do right by their child.  If or when they do something from the outside that seems completely insane we need to take a closer look.  How insane is it that our number one best effort to putting cancer in remission is to put more toxins in your body.  Toxins so strong that, at minimum, they limit your body's ability to fight additional infection and increase your risk for additional cancers!  What the hell.  I believe when all is said and done our cancer "cure" will not take the chemo form at all.  Future generations will look back at this as we look back at lobotomies, with great horror and shock.

Isla and I are at an amazing hospital.  Certain professionals view me as an important part of the team.  Others label me the "difficult" mom.  I am trying to work with them, but if ever I get the sense that they aren't giving me their best effort or that her care would be better managed from home, I would leave.  When all is said and done, my daughters health, happiness, and well-being will determine every decision. I look forward to a day when this will determine every decision a hospital makes.  In my dream world all adults working in the pediatric's hospital are exceptional at working with children (not just that they knew a couple) and they all understand the importance of sleep and happiness.  We need time to get our chemo and blood and fluids and so forth and so on.  But we also need time to be rocked, time to have uninterrupted sleep, and time to play with our friends and family.

So we are still here.  Going along with our assigned protocol.  It seems like the best option as of yet and she is handling her chemo like a champ.  Our quality of life is good.  Honestly, I can't tell you a time when things have been so clear for me.  We are a one-goal family right now.  We are enjoying the company of family and friends and making life the best we can.

Haha - and because this was originally started as a crafting blog I will post a bit of those too.










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