True story.  I am late a lot.  So late, so often that when I served this great country as an Airman in the U.S. Air Force, I was actually Article 15′d (look it up, it sucks) and given a LOT of extra duty because of my inability to get to work on time.  Now, once I was there, I wouldn’t leave.  15 hour days were nothing for me.  So I found it stratospherically unfair that I should get punished just for showing at 8:15.  Or 9:00.  Or WHAT THE HELL even 10:00 in the morning when everyone knew well and good that I would be the last to leave!  My commander did not see it my way.  I’m always a little amused now when people see I’m a veteran and assume that I know how to show up on time.

But I do understand that this is a major vice and shortcoming and so I try to compensate by building in some accountability for myself.  I say to my husband, “I will do this by 4:00 on Friday!”  I say to my best friend, “I will be there 15 minutes early!”  See, if I say I’m going to show up on time there is no pressure in that.  No, no!  No, I will be so good and show you this time by being early!  I will post a specific date that I am going to do a giveaway on my blog so as to make sure I follow through!!

This friends, THIS is where the complete inability to see the truth comes face to face with reality.  My little tricks, the little games I play with myself?  They never work.  And why don’t they work?  Because my Christmas was busier than your Christmas!  Because it’s a conspiracy!  Because I’m a loathsome failure! I have no idea.  I wish I did.  If I did, I’d change it.  Because I’m self-aware like that.

I do have a winner of the Children’s Art Project 2012 Calendar with Rachael’s picture on the front though!  Congratulations Lori!  Please email me at dkadams73@hotmail.com with your address so I can send it right off to you!  Like the second I get it!  I’m going to get off the computer and put in in an envelope this very second!  Or when the post office opens.  WHATEVER!  You’ll get it by 2012!

I hope everyone had a Blessed Christmas!  Despite the busy schedule leading up to it and showing up to my parents’ house 45 minutes late and the movie with friends 5 minutes late it was a wonderful celebration of a priceless and matchless gift that gives my family great hope.

From my family to yours, may 2012 bring you many blessings!

Case in point (rabbit trail alert), I have become the Chess Advisor for the kids’ school and I LOVE IT.  Now, I could go on and on and on about the wonders of creating a custom logo for our team and getting the kids excited about tournaments and new ways to teach the kids during the hour I have all 50 of them to myself for an hour each week.  I’ve already made my closest friends and some colleagues want to run from the room when I bring it up for the forty eleventh time this week so why would I also subject my blog readers to that?  Because it’s a part of my life?  Because it’s a good thing?  Yeah.  There is a reason happy people don’t write memoirs.  So all that to say, the past several months have been very exciting and very good and I refuse to make this place the one where people are all, “Oh God.  She’s bragging again.”  Click.

But!  I have to take this one post to brag.  And I mean really, really BRAG!

As you recall, we left off with me fretting about whether I was a little to pageant mom-ish getting Rachael ready for her catalog shoot.  We walked in the door and this is the first thing they said:  “There’s our cover.”

This is what they call the “Preview Catalog”.  She is holding her original painting here and let me tell you, it didn’t hurt sales!  We were so excited and we knew the full length version was coming out and we also knew there were other children photographed so it was met with no small amount of excitement when we saw this a few weeks later:

I adore this picture of her!  And those soft curls?  JUST REMEMBER WHAT WE WENT THROUGH TO GET THEM!  THEN!  The THIRD catalog comes out!

If you click on this link HERE you can peruse the entire catalog!  You’ll find a picture of Rachael and Marc together (Page 3)  that was used in all three catalogs, her card (Page 25) and the collection of items from Children’s Art Project, including the 2012 Calendar (Page 53) with Rachael’s picture on the cover!  Her art was not included inside the calendar but it’s her lovely little face that represents the kids of MD Anderson.

Also, in many stores across Texas and even a few other States, you can find this retail display!

I’ve had more than one person send me a picture of this display with something to the effect of, “HEY!  I KNOW HER!!”  Also, it’s like a fun treasure hunt when we go into stores we know support CAP, look for their display and then casually mention that THAT’S MY DAUGHTER!!  A little surreal actually.

Last week Rachael had her three-month check-up.  Everything is just fine with no worries and so when we left we stopped by the CAP headquarters.  We got to meet the design team and even see the archive library where they keep all the original artwork.  They encouraged Rachael to continue to make art and send it in and I am positive that she will contribute again but I told them that I don’t think anything will top this first year.  It has been very special and such an honor.  And as she gets older, she’s understanding more how lucky she is and how she can help other kids.  When she drew her “Happy Angel” she was only five and in the midst of treatment.  She forgets how hard that time was for her but I’ve asked her to reflect on it a little and realize that this… THIS is how she gives back.  She makes art, she smiles for the camera.  She acts as a representative for all those kids who are going through treatment.  And the money generated through sales goes to college scholarships and camps and she’s a part of that!

You can be part of it too by ordering from the catalog or if you live in a state that supports CAP, look for a display and purchase products designed by Rachael or other kids.

Now for a little Christmas surprise!  I would like to give one of you a 2012 Calendar from Children’s Art Project with Rachael on the cover!  To enter, just leave a comment and on Christmas I will draw a name and send the winner a calendar!

The next day I indignantly marched down to my local beauty supply store and was all, “What on Earth were you people thinking?!”  But unfortunately I got a minimum wage earning emo 17 year old who really didn’t care.  She was all, “Really?  Wow.  Weird.”  Notice, no exclamation points.  It was not “Wow!”  It was, “Wow.”  See the difference?  Obviously I was not going to get the sympathy I so deserved for making my daughter cry.

This time around I decided (without emo girl’s help) to go with very soft looking curlers that had virtually no holding power  Pressure was on because after putting them in her hair we packed up the car and headed to Houston.  I told her not to move in the car and she is seven so of course she stayed perfectly still.  If perfectly still means not sitting still even a little bit.  Then she slept in them all night and I can say this for those curlers… they aren’t velcro.  We stuck with the magic number 24 but by the morning they were just sorta dangling at the ends of her hair all pathetic like.   BUT… they did the trick and when we brushed it out her hair looked lovely.  We put her in the new outfit and we went to our little event.

Here is where I admit that I felt a bit silly and wondered if all the thought and work and forcing my kid to sleep in curlers two nights in a row was a bit too much.  I watch Toddlers & Tiaras with as much superior judgmentalism as the next person (don’t lie) and as I was walking into the presentation room it was with a small measure of paranoia.

Many of you know the outcome of the story.  The rest of you will have to wait.

Tomorrow!  I promise!!  Tomorrow!!

Also TOMORROW, make sure you check in because I’m doing a little Christmas giveaway.  If you read this blog, I promise this is something you are going to want!

When we were mentally preparing for the start of interferon and daily injections, Bo, a fellow Little Warrior’s dad informed us that chocolate actually has some analgesic properties and can really help take a bit of the pain away during unpleasant procedures.

Extracting twenty-four torture devices wrapped securely around every strand of my daughter’s long, thick, curly hair qualified as an “unpleasant procedure”.  Luckily, I had a hankering for chocolate chip cookies the night before and as she is screaming and I am hyperventilating I suddenly remembered that fact.  “RACHAEL!  Do you want a cookie?!!”  She stops wailing and blinks at me.  It is 7:15 in the morning and mama does not give cookies out before lunch.  “Really?” she intones incredulously.  “YES!  I HAVE COOKIES!  I’LL BE RIGHT BACK!!”  Not only did the surprise of a cookie in the morning shock her tears away but they were so delicious that she couldn’t possibly cry while eating them.  So, one by one, I slowly worked those demonic instruments of pain out of her hair.  Anytime I pulled a little hard or one was particularly stubborn and she would squinch up her face and start to make a squeal I would say, “Have another bite!”  She made it through two cookies.  They were big cookies.

Now, I did manage to get a picture of this but Rachael is getting older now and apparently putting unflattering (albeit incredibly cute) pictures of her on the internet is somehow not appreciated.  I promised her up and down that I would NOT show ANYONE that picture.  And I intend to keep that promise because one day when she is a teenager I want her to believe me when I promise to not freak out when she tells me something awful like she really does like peas.  BUT, I did manage to find a picture that is disarmingly close to the real thing…

It’s uncanny.  Really.

But then I brushed it out and the most amazing thing happened.  It looked absolutely stunning.  She had the big, beautiful, well defined curls and it was just exactly the look I was hoping to achieve. Rachael  looks at herself and says, “That was almost worth it!”  No Rachael.  No, there are not enough cookies in the world to make that even close to worth it you brave, insane child.  Back to the drawing board.

To be continued….

I picked her up after one of these classes and the ladies were all excited to show me Rachael’s painting.  It was quite good I thought and very true to her “style” at the time of giving girls blonde hair and elaborate dresses.  To this one she added a halo on top and the little town of Bethlehem below.  A Christmas Angel.  In watercolor.  The ladies asked me if they could keep her angel and I said sure.

Rachael was five.

About 8 months later I got a call from someone saying that her little angel made the first cut in the voting rounds for Children’s Art Project and would I give my permission to have it made into a sample card so it could go up for the final vote.  Of course I said yes and I asked how many made the first cut.  They said 50 pieces of art.  And approximately 25 would be made into cards.  So I asked if I would be able to vote and they said I could and I’m thinking, “Heh.  I’ve got a blog.  I’ve got a lot of Facebook friends.  We’ll stack that vote!”  I like to play fair.

I knew the voting would happen around January so I figured I’d get a call or a sky writer or some sort of indication that it was time for me to rally all my people to vote for my kid and when I heard nothing I thought, “Hmm.  I bet they have a Facebook page and there might be information about it on there.”  Sure enough, they totally have a page and when I went to it my heart sunk.

Voting had ended the week before.

Not one troop was rallied.  Not a single person who is totally biased for my daughter spent a week “voting once per day” (as I had planned).  I actually felt like throwing a little tantrum.  How could I not be told!  She wouldn’t stand a chance if I couldn’t secure her an advantage!  I was so sad.  I felt like I had failed her.

Then in March we got a letter.

“Dear Rachael, We are so excited to say Congratulations on being chosen as a designer for the 2011 Children’s Art Project Holiday Collection!”

WHAT?!  FOR REAL!!??

We were all so excited for her!  There was jumping up and down and squealing and calling Grandmas and just a tiny sense of shame that I thought she needed my help so much, overpowered by an incredible sense of pride that she was chosen by total strangers.

We were invited to a small ceremony honoring the Designers and of course we were going.  A couple weeks before the event I received a call from one of the people in charge asking if we would mind having her photographed for the catalog.  THIS JUST KEEPS GETTING MORE EXCITING!

Okay.  So this is a big deal and I knew I needed to get her something nice to wear that wasn’t too trendy because I didn’t want her to be all, “WHAT did you put me in MOTHER?” when she is a teenager.  Also, I needed something with sleeves because it’s a Holiday Catalog and nothing screams CHRISTMAS like a tank top.  Problem was it was middle of Spring in South Texas where winter ended in 2004.  I could not find anything that didn’t look like it came straight off the set of iCarly or the beach.  Trendy and sleeveless.  That was what every single store was selling.  I was getting panicky.

After looking in a LOT of stores and starting to feel downright pageant mother-ish, I did finally manage to find something I thought was perfect and moved on to the hair.  I consulted with several friends who have talent in this area and the general consensus was that whatever I try, I should do it beforehand to see if it works.  So, to bring out her beautiful curls, I decided to try curlers that she would sleep in.

I desperately wish I had a picture of this but she refused to allow me to take any pictures of her “grandma” hair.  Trust me when I say it was adorable and hilarious at the same time.  I got these “velcro” curlers and when I asked the lady how they stay in the hair she tells me that you just roll them up and the hair holds them in.  Okay, easy enough.  I go home, wash her hair and put 24 of these little curlers in her hair, told her to not move an inch in her sleep and I love you baby, sleep well!

Then I went into the bathroom to pick up and decided to read the packaging these wonder curlers come in.  It says, “For fine hair, do NOT roll more than once around the hair.”  Heh heh.  I’m sure they didn’t really mean that.  Too late now!

In the morning they have not moved one millimeter.  They are in EXACTLY the same place as I put them the night before.  Huh.  These things really hold.

You have no idea.

When I started trying to take the first one out I cannot explain how quickly I realized the perilous situation we were in.  Not only were they firmly and tightly stuck in her hair, the fact that she was a CONSCIOUS and SENTIENT being was going to pose a problem.  Those things hurt like a Mike Foxtrot coming out and I HAD PUT TWENTY FOUR OF THEM IN HER HEAD.  I had not gotten one out and she is SCREAMING in pain.  I’m crying and I really and truly believed I was going to have to cut them out of her hair and she would have to be hairless for the catalog.  I was so upset I didn’t even think of the irony in that.  Think of chewing a 24 pack of gum, rolling your kids hair around each chewed piece and then yanking it out one strand at a time.  It was going to be like that.

To be continued….

Rachael woke up yesterday looking pale again so I’m am assured that it was not a sunburn.  Still planning to be careful but I think for at least a little bit, rather than go to the pool, the kids can stay in the front yard under the big shade tree and play under the sprinkler.  I’m sure their babysitter is going to be super thrilled at the news.

Sunscreen is in the news lately, did you know?  As you may recall, I’m not so great at keeping up with the news.  But as we were waiting in the melanoma clinic last week, I saw on the front page of a newspaper in the waiting room an article about the FDA and some new sunscreen regulations.  Then, during the course of that doctor’s visit, the dermatologist that Rachael saw asked what kind we use and then spent a good amount of time discussing it with me and recommending a different kind.  And then Dr. Hughes brought it up when we met with him and suddenly after nearly two years of skin cancer, it seems to actually matter not just that we use sunscreen but what kind we use.

So, I thought I’d do a little research myself and you’re welcome because the articles and videos I have watched and read could NOT be more boring.  And I’m actually interested.  Here is what the FDA put out last week if you need help with your insomnia (the videos are especially monotone) but these are the points I found important:

• You need to find a sunscreen that specifically says “Broad Spectrum”.  Don’t buy it if it just says “UVA/UVB as there is not a lot of regulation (until now) on exactly how much of each it is blocking.  So look for the words “Broad Spectrum”.

• This isn’t in the article but the dermatologists at M.D. Anderson’s melanoma clinic advised that I use a sunscreen with the active ingredients zinc oxide and titanium dioxide.  These two ingredients act as actual physical sun blockers or reflectors.

• The words “water proof” are a lie and are going away.  No sunscreen is water or sweat proof and manufacturers are now going to be required to say “water resistant” and tell consumers how long they maintain their resistance.  If they do not say “water resistant” then they are not.

• There are no added benefits to using sunscreen with an SPF of more than 50 but if it is not at least 15, they will not longer be able to falsely advertise themselves as SPF.  Goodbye you joke of product Coppertone SPF 4!

• I asked the doctors what they think of the spray sunscreens.  My kids much prefer this because it’s so much easier to apply but the docs say no.  It is extremely unreliable what percentage of actual UV protection is coming out of the can.  Stick with the lotions.  I know.  I feel your pain.

• Sunscreen helps but to give an extra bit of protection, consider using SPF clothing and a hat.

Here are my recommendations:

Coolibar (click on the name and you’ll go their site) has the products recommended by the good doctors at M.D. Anderson.  Now, I’m not saying this is any kind of official endorsement or anything but when we got on the internet during Rachael’s appointment, this is the site we visited.  I just ordered five bottles of Blue Lizard (again, click on the name) to get us through summer.  This has the zinc oxide and titanium dioxide that they said is so important.  We’ve used several of the sunscreens listed on their page and I recommend trying a few and seeing what you like best.  I think they offered something like a “sample pack” once when I called to place an order.  You could try that.  Coolibar is also where we get our hats, swimsuits and some clothing for Rachael.  I LOVE this company!

In the meantime, a good one to get us through is Neutrogena.  You can find it in grocery stores which makes it appealing.  Just go for the lotions rather than the sprays and don’t bother spending the extra money on SPF 100 when 30 or 50 will be fine.  It doesn’t seem to have the zinc oxide or titanium oxide the doctors like, but it is broad spectrum which means it is going to protect you from both the UVA and UVB rays.

Pale skin has such a translucent beauty to it.  You know, Rachael is already getting compliments on her skin from people who don’t know her history.  Moisturized, protected skin is so lovely.  Of course, I am completely biased….

Update: I hear a lot of people talk about how they didn’t need sunscreen because they were in the shade or it was cloudy.  We used to feel the same way but one of the cool features of the Blue Lizard sunscreen is that the bottle itself turns purple when it is exposed to UV rays. We have experimented with this and are astonished to see the amount of UV rays that gets through shade such as umbrellas or trees and clouds provide NO protection it seems. I know wearing it everyday is a pain and to be honest, we don’t.  But Rachael does and when we are all going to be outside for awhile, even when shaded or cloudy then we do put it on.

We slathered on sunscreen, put our sun protective clothing on and with hat securely on head, left the house.

I sat in the shade and watched the kids play.  Rachael came in and I had her reapply sunscreen.

And tonight, when I tucked my daughter into bed, I admitted to myself what I had been seeing all evening.  Rachael got too much sun.  Maybe it wouldn’t classify as a sunburn but it’s darn near tan.  And Marc got WAY too much sun.

And I feel sick.  And all my words are gone.

I have a love/hate relationship with Summer and right now I just want to cry.  And I’m not looking forward to Monday when I have to tell the kids’ sitter that they must stay inside.  That my plans for swimming pools and duck ponds and parks need to be shelved because even though I like to say we don’t change our lives the fact remains that we live way too far South and the sun is too damn hot and I really don’t know how many times she can get a little too much sun before I’m risking cutting her life short.

And I’m so sad.  And I’m so sorry.

And maybe tomorrow I’ll have more words.

I knew what he meant.  He meant that we’re moving on.

That this… this isn’t that important anymore.

That we’re normal again.

***

People always get concerned around check-up time.  “I hope everything goes okay.”  “When will you know the results?”  I shouldn’t be, but I’m always a little surprised at their concern.  I’m not concerned, and I tell them and they look at me like maybe I’m a little strange.  That’s okay.  My default is that we are okay.  I do not expect anything different which I suppose means if I were to encounter anything different I would be wholly unprepared but if I worried about the worst would I be prepared anyway?

This visit did not surprise me.  Rachael is doing perfect.  Everything is clear and wonderful and normal.  And Dr. Hughes talked about maybe after our next visit, we might be able to space the check-ups out by an additional month.

I’m starting to feel like Rachael is an upper classman in this whole cancer thing.

***

Rachael has had several “celebrity moments”.  She’s had T.V. interviews (more than one), photo ops, her name on her school’s marquee.  So she says to Dr. Hughes yesterday, with a bit of fake shyness in her voice, because Lord knows she is NOT shy about her supposed fame, “I’m kinda like a celebrity.  I mean, I’m like, famous!“  Then she wonders out loud, “Is everyone who has cancer famous?”

I thought this was interesting.  I took it for granted that they were actually.  Childhood cancer is pretty rare and though Rachael has reached some level of fame in say, her school, the child with no hair sitting next to us in the waiting room is surely famous in her hometown too.  So it was with a bit of surprise that I heard Dr. Hughes saying, “No, actually this does not happen to all kids.”

Then I get nervous.  Because I have the “guilty conscience gene” I start thinking, “Oh God.  Have I sold my kid out?  Is that the reason?”  I mean, I’m not exactly opposed to playing the “cancer card” if say, I’m being pulled over while driving to Houston for going 2 miles over the speed limit (I swear those cops in that long stretch of nothingness are bored).  “Where you headed ma’am?”  “M.D. Anderson for my daughter’s cancer check-up.”  “God Bless you ma’am.  You drive safe now.”

I’m not proud.

Anyway….

Where was I?

Oh yes, whoring my kid out.

So Dr. Hughes says, “Do you want to know why people want to put you on T.V.?  Because you are cute and you are well spoken.  And when we get a kid who is cute and well-spoken, we try to use that as much as we can to help other people know about how we can help them too.”

He said some other stuff too but all I could think was, “M.D. Anderson is totally whoring my kid out.”

And guess what?  I am totally okay with that.

Now, go put on some sunscreen.

Because this is not Danielle.

This is her bestie…Amanda… who has broken into her house and hacked into her computer just to wish her a HAPPY BIRTHDAY!

Fierce. About birthdays at least….

So here’s my birthday message:

Danielle,

Everyday I am thankful for your friendship. On your birthday I want to celebrate you… but more than that I want you to know much I love you.

Thank you for walking though beauty and heartbreak with me. And letting me do the same for you. Thank you for making me laugh everyday. Thank you for adventure. And new traditions. Thank you for being aunt deedee. Thank you for sharing your family with me. Thank you for smiling everytime I say I have a plan. Thank you for not just tolerating my complicated but enjoying it.  Thank you for loving me when I am a mess and when I am not. Thank you for listening, and talking, and being quiet. Thank you for silly. And serious. And real.

Thank you for you.

I can’t wait to really celebrate!

Love,

Amanda