Halloween

 You wanted to embrace the baldness for halloween.  It was a tough choice between a skeleton rocker, or putting a face on the back of your head to be a backwards forwards girl. 

Rocker Skeleton won.

I dare say it is the most unique skeleton costume anyone has ever seen :)

Confidence

 Snakes have a layer they sluff of every once in a while.  It will become dry and brittle and they rub over rocks and sticks pulling free from the old, ready to embrace a new layer of skin. 

We parent's want to teach our kids to be comfortable in their skin. From the minute they are born we cheer on their sucess and nudge them forward with their talents.  We want you kiddos to love those thing that make you unique.  You have never had anything in your appearance that has set you apart more from those around you like you have now. 

I have watched you deal with the drastic change of your hairloss like a champ.  We did all we could think of to make it an easy transition for you. You have a very impress collection of headwear.  But nothing has given me quite so much joy, as to see you start to pull off those hats, and headbands, and scarfs and just be comfortable in your new skin. 

You know that people may whisper, or point, or even stare sometimes.  But it doesn't slow you down or keep you from doing what you want to.  You are able to laugh if someone asks if you are a girl or a boy,  and know, that you may not have known either had you been in their shoes.  You are okay with it, because you know who you are, and the things that make you special aren't always on the outside. You even like your new do so much you've thought it may be good to shave your hair off every year.   That makes me feel like we are doing something good. 

Snakes, they don't look back at that old skin.  I dont think I've ever seen one try to slither back inside.  I'm glad you are comfortable in your new skin.  Someday you will look just like everyone else.  Your golden hair will sweep across your shoulders again, and your cheeks will have a soft, glowing roundness to them, and I have no doubt you will be a great helper for those who need a little help being comfortable in their own skin. 

Bracelet for sale

I remember when we first went to the hospital and we were waiting around for a few days before you had your surgery.  We would wander down to the gift shop, that is filled with all sorts of fun things.  You had already aquired some fun gifts in your small time at the hospital, but you really wanted to get a charm bracelet.  I don't blame you.  With all the fun animated charms dangling in front of us, i sort of wanted one too.  I told you no, feeling like i really wanted to give you the world, and all that you wanted in it, but knowing that a pile of stuff wasn't about to change your future.

 I decided though, that when you started your treatments I would surprise you with a charm bracelet for you to add a charm to each time we finished a treatment.  It was so fun after a long day to go to the gift shop and find something that related to you at the time.  A princess crown for our story; a bowl of cereal, because that is all you ever eat; sunglasses for the hot summer we were in; an ipod for all the playing around on yours you had been doing; an ice cube, cause it's so darn cold in that hospital.  We have quite a collection. 

But these days, you'd rather see it sold. For you, the thought of picking out a charm turns your stomach.  It's one of the subtle reminders to me that you made this all seem easier than it was. Because once you started feeling better those charms were a jingling reminder of your sickest times.  Despite protest, we kept it going, even though you may wish it away.  We will tuck it away for when you are old. Because someday you will have a daughter of your own sitting on your lap who will ooh and ahh over those priceless momentos hanging from each ring, and as you tell her what each charm means you will truly understand how brave and strong you were.

Vision

Kaylee, you will hear a lot of people say that hindsight is always 20/20.  What that really means is when you look back on a situation you can see it much clearer than when you are actually in it. When I see your improvements it only amplifies in my mind how easy you have made this all look. Deep down I know grown men that would rightfully stay in bed a week after a big does of chemo, or weeks of radiation. But, it's hard for us parent's sometimes.  Maybe because we want to pretend like it really isn't all that bad.  Or maybe because we just will never know what it is like to be in the shoes of our sick child.  All we can do is try to keep your life going along as normal as possible. 

So, I hope you will forgive us that we made you clean your room, or put away your clothes, or put your dishes up, even if you didn't feel like doing it.  Now that I see your energy returning again, I realize how subtlety it depleted only coming in bursts for a quick bike ride, or sprinkler session.  As a mom, any energy we see quickly translates into cleaning energy or getting stuff done energy.  But you know it's not that simple. You knew before we did.  It's all so clear now that you have bounced back into your self-sufficient ways,  that none of this was easy for you.  You just made it look that way.  Looking back has shown us the full scale of how awful you felt during those rigorous treatment months, and I am more impressed with you than ever. What a lucky mom I am to have you here to teach us such important life lessons.  Thank you for showing us all how to be strong when it's hard, and without complaint. And for teaching us to use what energy you have for only the very most important things-like play time with family.  It's a shame that foresight isn't as clearly seen as hindsight.  But I have learned that what is in the future can wait, what is in the past can teach us, But what we do in the present is what we need to make really count. 

Support

Sometimes you need words to tell a story. . . .


                                                            . . . . And sometimes you don't.

Awareness

Coming into a new school in the middle of the year is the pits.  So, doing it two years in a row, is more than the pits, it just plain stinks.  You have not been the least bit interested in going to school, because you know you will have to start mid year after everyone already knows their way around.  You are very aware of how that is because you just did it last year when we moved. This year we are in yet another new school and since you are homebound right now, you will have another mid year entry.  Having your teacher coming to our house has been an amazing help.  She keeps us connected with the kids in your class.  She passes messages back and forth, she shows you pictures of everyone, and lets you know when they have special events. 

We read her our story, and she suggested we come read it to the class.  We told her we would bring a craft too.  You were starting to get excited about meeting the kids. When we arrived they greeted us with a big sign that said Welcome Kaylee!  We told them a little bit about cancer and why you have to stay at home.  Then we read them our little fairy tale. 

 I'm starting to understand why people talk about cancer (or any illness or disability) awareness all the time. I can't say before now that you or any of your siblings were very aware of differences kids could have.  And it is easy for a cancer patient to feel so different in a class full of healthy, energetic kids who have heads full of hair.  It's funny how talking about it makes people less afraid and more understanding.  No one from your class needs to whisper about your missing hair, because they can ask you about it.  You don't mind.  You like your differences now, and they do too.  Just taking that little bit of time to give some explianation and tell a funny story about cancer and treatments made everyone more connected.  Before we knew it you went from the mysterious girl who's desk has been empty the whole year, to just one of the kids.

After some talking, we started our craft.  We brought surgical masks for everyone to decorate. We told them that you wear one when your immune system is low to keep from getting sick, and told them they could keep theirs to play doctor, or give it to someone they may know with cancer. 

 As we were leaving, a little girl ran up and asked if you wanted her mask.  Soon other kids were giving theirs to you, until nearly everyone gave you their mask.  It was so sweet and such a fun thing to bring home to remember the friends you have awaiting you in your class. 

A Princess

Who would've thought creating a princess could be therapy? Who would've thought writing about her journey could help us sort through our own feelings?  Who would've thought imagining our story in the hands of another little girl just learning about her cancer, could give us something to think beyond ourselves?  Who would've thought reading it to your school class could bridge a gap between kids?  Who would've thought her adventure could make us laugh instead of cry?  Who would've thought that princess overcoming her stuggles could give us confidence? 

Then again, who would've thought that a princess could be bald?

Kaylee, I have cherished the time we've spent writing a story for other little girls who may lose their hair. I have savored every moment of seeing your talents shine.  I love hearing your heartbreaks, and your successes. Who knows maybe someday a little girl sitting in a hospital room in the oncology unit will be holding our story in her hands, and viewing it's glossy illustrations and feeling a little more confident about the things that lie ahead of her.