September 30, 2013

Going public

I saw this post today and I found myself nodding my head in agreement at nearly all of it.  Rest assured, I don't get upset or angry when friends say these things.  They really do seem like the right things to say, and I know that the intention is always good.  The "You're so strong" comment does tend to bother me, although I know it comes from a really good place.  When someone says that, I feel that I don't have any other option than to be strong.  Sometimes I'm not strong.  And sometimes I'm sick of being strong.  I know that I'm not doing anything that any other parent wouldn't do.  When something like this happens, when your child is diagnosed with a life-threatening disease, you step up.  You have to.  At any rate,  I don't take offense to any of those comments because I know that it is all said with love, and I know that people don't know what to say.  If the tables were turned, I wouldn't either.

We have, however, had our fair share of stranger interactions because of Madeleine's cancer.  From the little old ladies (ALWAYS the little old ladies), to the servers at restaurants, to people on planes, in airports, wherever.  I'm pleased that there have been, by far, more positive interactions than negative.  In San Francisco someone approached us on the street to ask what kind of cancer Madeleine has.  I inwardly cringed because these conversations with strangers often leave me exhausted.  I don't want to explain what it is and how it got there, and what we are doing to get rid of it.  I don't want to see that look of pity, and then hear the inevitable, "I'm praying for her."*  This woman, however, smiled and introduced herself as a childhood cancer survivor.  This has happened to us a few times now, and I always appreciate it.

I also appreciate the smiles from other parents.  It's obvious that Madeleine has cancer, and they know it.  I loved the guy in the Los Angeles Airport that came up to Mad and told her she was beautiful and asked her if she was a movie star.  I teared up when someone gave her free ice cream and told her that he was a survivor too.  A couple of times someone has paid for our meal at a restaurant - one time they introduced themselves, and one time it was completely anonymous.

When we were in Sea World, a man in uniform (Air Force, I think) came up to her and said that he had been to war in Afghanistan and that she was far braver than him.  That's all he said, and that's all he needed to say.  Ryan and I both appreciated this so much.  It's these little moments of compassion that truly make all the difference to us.

I started writing this with the thought that I would describe some of the less than ideal encounters that we've had, but I'm happy with the direction that it took instead, so I will leave it at this:

DON'T ask, "What's wrong with her." (ESPECIALLY in front of her).
DON'T ask, "Will she be OK?" (believe it or not, this happened, also in front of her).
DO smile.
DON'T tell me that, "God has a plan."  In what f-ed up world is giving a kid cancer anyone's plan?
DO tell her she's brave, or smart, or beautiful.
DON'T stare.

*To be honest, prayer is not really my thing, personally, but I certainly don't have a problem with people praying for Madeleine.  In fact, I appreciate it.  I know that people feel helpless, and this is one way that they feel they can help.


Anonymous said...

Well said Amber! Mom

christine said...

You are Amazing Amber! And you are right, what "God" would allow a child/family to go thru anything like this, I don't know. But thank you for sharing, because a lot of us have such tragedy in our lives and it helps to know there are good people out there with kind gestures and a good heart.

Nana Nancy said...

People reach out in many different ways. Thank you for sharing your experience, your guidance and direction. We are all learning every day.

Bree said...

Great post. I never know what to say other than to let you know im thinking of you guys. I wish you werent enduring this.
I always said Id let others pray for me because I never could for myself. I dont believe in God, really, but I do believe in the power of words and putting good thoughts out into the universe. And, I will continue to think positively for you guys.
Hang in there, friend!

JT said...

2 good posts Amber! (Yours and the Scary Mom's too!) It is amazing how un-thoughtful people can be. Have had some weird experiences that way too---different subject, but in much the same way. I have wondered if my open-mouthed- speechless-response helped them realize they blew it. Whatever. Thanks again, for sharing your heart and journey!