Friday, May 27, 2011

The C Word

Scarlett's chemo ended late last night, and so far, she's doing great!  Now, just the long and arduous wait for her system to clear.  I am so glad that this is the last dose of this chemo; the next cycles do not include methotrexate.

I have been experimenting with how to talk to other people about Scarlett.  It is not an easy thing to explain why my baby's head is caved in, especially when they are completely unsuspecting.  I know I have no obligation to other people, but I feel that it is better for Scarlett if we are up front and open about whatever is going on, rather than trying to hide it or lie just because it is easier.  I never want her to feel like she has to hide or keep her head down when she goes out in public, and so I want to be an example to her.

When people see her, they react in a few ways. In the last few weeks,
  • At the post office, the clerk at the desk saw her NG tube and asked, "So what does a kid do to get one of those?"
  • At the grocery store, a lady asked nothing except "Will your baby be okay?"
  • At Old Navy, a grandmother shopping for her granddaughter, who was the same size as Scarlett, asked what had happened, and then proceeded to cry in the store. 
I have been playing with ways to respond to these inquiries.  Will she be okay?  I wonder that myself.  How much do I share?  The easiest is to just say, "She's had some challenges, but she is doing well."  This skirts the issue and lets us move on.  It doesn't seem to satisfy curiosities, though.

By far, the most difficult thing to say, and what seems to be the hardest for people to hear, is "She has brain cancer."  Something about the c-word really upsets people.  Tumor does not evoke the same response.  Cancer has such a history, and is much more known.  When I say brain cancer, I can see people's faces cringe, their minds go directly to their grandmother/cousin/coworker/friend who has had cancer.  They do the "pity head tilt" (from Friends, anyone?) and offer to pray for us.

As soon as they react, I feel bad for ruining their day; nothing brings a gray cloud to the picnic like a baby with cancer.  I try to be upbeat, ease their worries...and then I find myself actually comforting them, wanting to relieve them of the burden of my child's life.  It's a huge task, and something I am just not really up to most of the time.  The c-word is hard for me to say.  It seems so final, so severe.  I don't like to think about her that way, either.  Just like the people we run into, I would like to imagine her just a little under the weather, not with cancer.

Chris and I have both felt this stress lately.  It is too much responsibility to try to comfort other people when they ask about her.  We just can't manage it right now.  He does a better job than I do of being honest and letting people deal with it how they will.  I am still working on how to comfortably face the world with her while not apologizing for how others feel about it.  Maybe it will be easier when she is older and can show people how well she is doing.  Until then, I am learning to be brave so that I can teach her.


    14 comments:

    greeneyedgirl said...

    Oh Brandi I think you might be the sweetest person on earth worrying about how other people feel. You are such a beautiful person and Scarlett is going to be anything and everything she wants to be. While I would guess it's hard to go with the "she's had challenges but is doing very well"...it seems to me that it would take a lot of pressure off of you. Whatever you do, know that thousands of people are praying for you and think of you every day. xoxoxo Teri from BBC (Evyn is a week younger than Scarlett)

    Danelle said...

    You worded this so beautifully. It just shows what a caring person you are. It is not your burden to comfort other people, but it is your nature. There is nothing wrong with that. Maybe let people know that it's a difficult subject for you. That way you are being truly upfront and honest, and others will "mom up" in your presence. Much love from Texas!!!!

    Mrs.Andrews said...

    it's ok for people to be empathetic. It is one of the beautiful things about being human we CAN feel sorrow for others. That doesn't necesarily bring someones whole day down. a moment or two yes, but in that moment or two they are also filled with the gratitude and appreciation for the healthy children/grandchildren they have. In a way, you sharing her story like you did to the lady in Old Navy is giving people a chance to truly realize what they have. Those people might go home and hug their children one more time that day. Or say one more prayer for Scarlett that night. It is painful to share, but it is worth it. Let people feel, let them feel hope, sorrow, joy, and fear with you. IT is what makes us human, what makes us real, what makes us grow as individuals. I am proud of you for facing this and for conciously trying to find a way to overcome it. *hugs* you will figure it out, take your time and don't let your concern for others feelings overcome you. Your daughter and your family are all that you should be truly focusing on. Know you are supported, always.

    The Chung Family said...

    All I can say is "Oh wow!" I never thought of your side of it in this light. To help the rest of us out if we ever to do run into a baby who has cancer or any other life-changing diagnosis - what can we do to help? What is a good response? I don't know if you'd ever get the time to answer this, but if there is anything you can teach us, please feel free to! (I say this realizing and hearing your completely tapped out, and so I'm sorry in that I don't mean to add to your plate) Hope that all makes sense. Thanks for sharing this.

    Scarlettsmama said...

    You are so amazing! To worry about how other's feel about your little girl's illness. I think you just have to say what you are comfortable saying at the time. Some days it might be "She's facing some challenges but coming through really well!". Some days you might be ok sharing the "c word" with people. Just try to take it on a case by case basis. That's what I do when people ask me about my daughter's Hemangioma. She has a very prominent one right on her little forehead. We get stares, questions, second looks EVERYWHERE we go. I don't even notice it until someone else does anymore. Usually I just say "She was born that way" Sometimes I elaborate a little more and tell them it will eventually go away. It all depends on the person. I'm not trying to trivialize Scarlett's condition by comparing it to Delilah's Hemangioma. I just know how it feels to have people stare and ask questions. FWIW when I first read Scarlett's story I cried, a lot. But the amount of joy and hope I've found reading Scarlett's triumph over cancer far outweighs any sorrow I've felt :) My oldest daughter and Scarlett's name twin :) loves hearing stories of how Scarlett is beating this one battle at a time. Thank you for sharing Scarlett's story with us!

    Paulsen Mommy said...

    What an incredible heart you have. WOrried about how others feel. I think that the way you have it worded about it about her challenges but it doing well, is a great response.

    just btw I love Friends and I can totally see this scene with RIchard. Cracks me up!

    Praying for you and your sweet Scarlett

    Christina said...

    Hi,
    I have not been able to check up in a while. I am so glad to hear all the great news - no tumor! You three (well 4 if you count Cosmo) are always in my thoughts. Please give Scarlett three big kisses, one from each of us.
    Be Brave, Be Strong, Keep Fighting
    Love Christina & Kaitlyn (DH too, even though I don't mention him much LOL)

    SLM said...

    I think your blog is great for you and for those of us following Scarlett's life! For those times when you're out and about and folks ask about her, what would you think of having "information cards" (business card size) with just a little bit of her story and your blog address (and perhaps websites for links like you have here to St. Jude's, etc.)? It's just a thought, and I'd be happy to help (there are some very inexpensive print companies online $) if you want to try it (I left my job last fall (and had a new life the same day Scarlett was born in fact) and had some cards printed for transition period contact information - not the same thing of course but it's a good way to explain a situation and leave folks with something to remember)....

    V*P*A said...

    Wow, this teared me up. I like the idea of having a card, only I would just put the blog url on it, if the "She's had some challenges, but she is doing well" didn't see to satisfy their curiosity. You are an amazing mom with an amazing child.

    Courtney said...

    I totally admire you. I have 2 girls (you & I were in the same Bump group for my youngest - October 2010 babies) and being an example to them is huge to me! Scarlett is lucky to have a mommy who is already trying to model to her how to see herself! I'm in the area (San Jose) so if you ever need a meal or starbucks dropped by or anything just let me know.

    Jessica said...

    Your blog is a wonderful teaching tool. I was just talking to my DH about what you wrote here and both of us said - why do people even feel the need to comment/ask? We both would probably just try to "act normal". I wouldn't go up to a stranger with a cast and ask them what happened so for me it's no different for a baby with an NG tube, a physical difference, or a helmet.

    I don't know that there is a perfect way for anyone to handle this situation, but it has brought it to my attention that if I am ever in the situation to comment/ask - to consider how the parent feels. I still don't think I'd be direct enough to ask about the problem, but it makes me realize it's probably more helpful for me to focus on the positives of a stranger's baby (she has such beautiful eyes, what a wonderful smile, etc) than to invade someone's privacy and put them in a situation that may be emotionally difficult in an already stressful situation.

    Thank you for helping open my eyes :)

    Jamie said...

    It took me awhile to post on this because I was (and still am) having trouble finding the right words. All I can come up with is "too bad" (I really wanted to say "tough shit" but thought it might offend Scarlett)for those who may feel sad for a moment or 2 when they meet her. Really. I mean if Scarlett can survive 20 hour brain surgery and months of chemo, and several other issuey surgeries, then surely, SURELY I can find the strength to simply HEAR about her story and carry on...as can everyone else. And if someone cannot find a way to pull themselves together after they hear about it, then they are welcome to ask Scarlett how it's done. If one person's day gets ruined then bummer. I am willing to stake my own life on the fact that Scarlett makes more people happy than she does sad...

    And one more thing- having brain cancer is as much a part of who she is as having those pretty eyes and smile of hers. It's what makes Scarlett Scarlett. If you've got it, flaunt it. ALL of it...

    The Hubbs said...

    You guys are amazing, I haven't been in your situation, but, maybe hand out business-type cards of the blog site! Maybe tell them to they can check out the full version there but that Scarlett is well on her way to recovery!

    Busygirl said...

    I was following your blog since the beginning but haven't checked back in for a few months. Some forum mommies were talking about you today so I came back to visit many old blog posts.

    Looks like Scarlett is doing so well! She's such a little miracle and she's so blessed to have you as parents. :)

    I can't believe you were worried about how strangers feel! You should the ones that people console, not the other way around. That just shows how kind you guys are. I can't think of a better word than "kind" to describe you.

    Really love your whole family.