Happy Valentine's Day etc etc...

Happy Valentine's Day!  This day, February 14th, often full of news feeds of flowers and chocolate, balloons and stuffed animals, fancy dinners and jewelry means so much more to me than any of those. Don't get me wrong-hubs got me an absolutely tantalizing gift of Christopher Elbow chocolates (if you've never tried them you are truly missing out) and I left him alone in Home Depot yesterday. But this day also signifies the end of Congenital Heart Defect Awareness week, and of Tube Feeding Awareness week. 

Both of which have very special places in my heart since the bald kid falls into both of those categories. 

But more than anything, every 2/14 I go back to 4 years ago when I got my official diagnosis of Breast Cancer. 

My Cancerversary. 

4 years. 

From fun and craziness of the Policeman's Ball the weekend before to the sobering, questioning reality of waiting for my biopsy results. 

I am happy to say that 4 years have flown by-and not without some lingering effects of chemo and ongoing fatigue and weakness-but for the most part have been great years. Cause I'm here. 

Because I got to be here four more years. Four years in which I got to take my son to Boston and watch a miracle be performed. 

I got to watch my daughter graduate from high school with the highest possible diploma in the district and hear her moving speech on Special Needs Families in order to get that diploma. 

I got to try and teach Parker how to drive, only realizing it was much better for my sanity to just let someone else do it. 

I got to plan a fantastic family vacation with my wonderful husband and spend every day of it laughing. 

Most of all I got to have 1,460 more days of waking up knowing I had a choice to make each day count. For me, for my family and for everyone around me. 

1,460 days doesn't seem like that many. I actually had to calculate it 3 times just to believe it myself. But in time and moments, 1,460 days is a lot. 

A lot I'm grateful I didn't have to miss. 

Since next year will be 5 years for me, I'm planning to do something awesome to commemorate it. 

My 5 year Cancerversay I'm going to commit to doing the Avon 39: The Walk to End Breast Cancer. 

39 miles in 2 days. Yep, I will walk 39 miles in 48 hours. 

I will have to wait to see exactly which locations are available for me to choose from, but I guarantee I won't be choosing one in KCMO-I'm thinking more like New York or California. 

Brian is in support of me doing this-as he is in all my crazy ventures.  And we are going to make a fun trip of my self-induced torture to help end breast cancer. 

If anyone wants to join me-I welcome the companionship-just be prepared to walk your tail off with me. 

Just like with me beating breast cancer I will need all of your help!  Once I commit I have to raise $1800 for the walk, so I will be hitting all of you up for donations and I will also be doing some fun fundraising in the way of pink ribbon pins, bake sales, craft sales, etc. Let me know if you have any ideas to help! 

I'd love to think that my walking 39 miles really will end breast cancer, but I know that will only happen with continued awareness, early detection, research and better options for Stage 4 diagnosis. 

So I will walk 39 miles for me, because I can, and because I was given an extra 1,460 days here to make a difference. 

And I will walk those miles for all still fighting breast cancer-and it's terrible long term effects (because you're never really done fighting) and for all of those gone too soon from this terrible disease. 

So on this special Valentine's Day I say 

F you cancer. Thank you for giving me those 1,460 days, I intend to live at least 1,460 more and make the most of each one. 

Been a while...

It's been a long time since I've updated my blog-since early August to be exact!  Since then we've dropped our oldest off at college at the University of Arkansas on August 14th and we were the crazy parents who stayed all weekend. Other parents dropped and ran, cut the cord cleanly, but noooo, not us. And I'm glad we didn't. We got to see our sweet girl's smile get bigger and her confidence grow in just one short 3 day weekend as she realized she was basically on her own.   We got to take her and her new roommate to dinner and her high school friend to lunch and hear all about the beginning days of Rush. 

Then I cried at Zaxby's the next day while ordering my chicken strip meal combo and the waiter asked me if we had just dropped off a college kid and where we were from. Yep, busted out in tears in the middle of the restaurant. 

The next week was a whirlwind of emotions-even though she hadn't started classes yet, Rush took up the majority of her day, every day, and she couldn't have her phone on her.  We got to briefly chat each night. My excitement for her grew as she talked about each house she visited and their philanthropies and missions.  I was fortunate enough to be able to drive back down to Fayetteville on bid day and experience all of her hard, grueling, mentally and physically exhausting week come to fruition when she received a bid to the Alpha Delta Pi Sorority House.  In the ADPi House my girl has found all the sisters she never had. She's found her niche, her place in the world and she's thriving. 

We miss her in our house and the bald kid sure had a hard time adjusting to her being gone. The first time she came home he ignored her for the first few hours-I think he was giving her the silent treatment for leaving him. 

She's been partying it up, but she's kept her grades up. It helped she took several college credit hours with her, so she doesn't have such a heavy load this first semester. We've assured her it's ok to say no every once in a while to an invitation-and stay at the house or in her room and just hang out. When she has been home she's spent more time sleeping in my bed, watching Grey's episodes than anything else. Moments I wouldn't trade. She's about to be home for a month and I'm sure she'll get lots of rest and be bored with us in a matter of days!  Hailey's houses philanthropy is The Ronald McDonald House Charities-so save all your pop tabs for her-she gets diamond points towards qualifying to live in the house next year. If you have some-just let us know-she'll come get them during break! 

Parker is a junior in high school and has expressed an interest in joining the military upon graduation. He's stepped up and helped us out around the house and with the bald kid a lot in Hailey's absence. But we are really struggling with him and his grades. It makes me crazy and stresses me out that he's doing poorly because he's so smart, just has a lack of motivation. Brian and I are  struggling find something to motivate him. He still doesn't have his drivers license so we are going to put him in a driver's class this month in the hopes he can get his license in January. I'm hearing  from other teenage boy moms that this is pretty normal behavior. I hope so, because I'm really beginning to feel like a failure at this boy mom thing. If I'm not a screaming banshee about his grades, or not turning in his homework I know he's done, it's not a normal day in our house. At least the bald kid won't be going to therapy because of me someday! 

And the bald kid, he has been doing great!  His cardiology appointment in October showed the Melody valve placed in Boston 2 years ago is working as well at the day it was placed!  Such a relief and a blessing. We are now only seeing the great Dr Kaine yearly!  Yep yearly visits!  Woo-hoo!  But, life is simply not that easy in the bald kid's world-and we found him to have maldescent of his tested. Meaning: his poor little balls didn't fully drop.  Off to see Dr Murphy in Urology to have those brought down and a little 2mm hernia in his left inguinal area repaired. Unfortunately a few days after surgery, and we think, as a result of being intubated, his asthma flared up and he spent 4 days at the big house; Children's Mercy. He just needed a little oxygen and steroids and he was home by Thanksgiving.  Our next big procedure with Ethan is taking him to my friends in the Interventional Radiology Department at Mercy and have his salivary glands injected with Botox. We are going to try this to see if it helps with his constant drooling. His drooling has become so bad he has a constant rash on his face and he gets choked up on his own secretions. We can't risk a winter of aspiration pneumonias with him. I've heard mixed results of Botox helping this-so if any of my special club members have any experience with this-I'd love to hear from you! 

Brian and I are same old, same old. Working and not taking care of ourselves. That's going to change this month. I was just started on blood pressure medicine because I've had terrible headaches for over a month and my pressure has climbed high enough I'm a walking stroke candidate. Since my husband and son can't manage to get the dishes done after dinner, I'm not going to trust them to keep me looking presentable should I have a debilitating stroke. God forbid they realize when my eyebrows need plucked and face needs waxed and dress me in mismatched sweat outfits with drool and food spills on my shirt. So, I'm safer to take my meds, get healthy and prevent that from happening.  We purchased the Hitch Fit couple's weight loss online program last year and we know what to do-they spell it all out for us. We are committing to starting and sticking it to it. So if you see me with a Coke-feel free to call me out on it-and take it from me please.

  Our Thanksgiving was wonderful, spent with family at a time a friend just lost her Mother, I know how lucky I am to still have both my parents and don't want to take for granted that will always be the case, as I know it won't. 

We haven't spent much time with our friends lately, and haven't been very good friends. We are bringing back the Rawley White Elephant Christmas Party this month and hope you all can make it! It's always been a blast in the past-this year promises not to disappoint! 

We've talked a lot about buying experiences rather than things lately. And agreed not to go all out for Christmas, but rather be more present with each other.  We are collecting items for our local elementary school kids through a program at my job to help provide them with Christmas gifts. Toys, socks, hats and gloves and gift cards are welcome, along with cleaning and personal supplies. Parker has also taken several names off the Ornament Tree at his school we will buy gifts for. So far it's been toothbrushes and toothpaste-and this breaks my heart as I know too many kids out there are getting necessities for Christmas gifts rather than something fun. We take for granted that the things we need everyday like toothbrushes and toothpaste and personal hygiene items are bought without a second thought. That I can load up my shopping cart at a store and check out not worrying what the total will be, because I know I have the money in my account. Yet watching a woman next to us have to put items back because they cost more than she had, and my wonderful husband then paying for them for her and her kids.  We're not rich by any means, but we can sure afford to help others out and that is our goal for this season; random acts of kindness whenever we can. Paying it forward as people have helped us in so many ways. 

This has been a long post, and as always I will promise to post more often.  In the meantime, I hope the Holiday Season finds all of you well and happy and healthy and I hope you too can help bring a smile to someone's face with a small act of caring. The reward is a feeling like no other. 

Cecil the Lion vs so many other issues...

 I'm hoping you read the blog link I posted in FB before this post, but if you haven't, here it is-and please read it. It was shared with me by an old friend I have a lot of respect for, and has seen a whole lot more of this big spinning ball we live on than I have:

Everyone needs a little Grace In their lives 

Gilandamy.blogspot.com

I was just talking to my husband about how I want to contact a nurse friend of mine from CMH who has done some mission nursing work. Bobbi-I'm talking about you in case you can't tell ;)

And find out how I can go about joining her on one of those.  And then I read this blog.  

I had this same discussion with some co-workers this last weekend: a dead lion has gone viral but kids with no water doesn't affect social media the same way. 

People die of malaria-which we simply do not have in the U.S.-and a $10 net could save their lives. Just ask my Uncle Clifford Rawley who supports malaria nets for Africa with a basketball shooting fundraiser: Nets for Nets. 

We complain about our government but we get to vote our leaders in. Some of these countries have terrible dictators who live a lavish lifestyle while their country lives in poverty.  And not one of my friends on FB reading this lives in true poverty like in many African countries. 

And as I send my oldest off to college next week, encouraging her to 'make her mark on the world', I wonder what mark I will leave. And if it's one my kids will be proud of me for. 

And though I love animals dearly, and it's terrible that Cecil had to die that way, my heart aches more for hungry, starving children and HIV rampant countries and women being raped and people working for $1.25 a day and parents who walk miles every day for water for their families. 

As I turn on my tap to get a bedtime glass of clean ice water and lie down in my Tempurpedic bed in my air conditioned house with full electricity  and prepare to go to my job that pays me far more than $1.25 a day, Cecil seems far less media worthy. 

But then again, those other things mentioned probably make most people squirm a little uncomfortably, and we don't like uncomfortable now do we?

Flaws

So I had a little dental work done today.....

5 hours of being in a dental chair little.  

When I was 8, my newly permanent front tooth was knocked out completely courtesy of my big sister Kim pulling me off a bathroom cabinet. I hit my open mouth on the hard counter top and it split it in half. Long way. The next day the other half fell out in my breakfast cereal bowl. 

Needless to say, I have had years of dental work. From a partial flipper of just that one tooth until it was permanently placed in high school. Then a bridge placed 2x through my adult years. 

And I've never been completely happy with how it looked. Don't get me wrong-each change was an improvement over the previous one, but I still hated the way my smile looked. It bothered me in all my pictures. 

Most of you have no idea my 3 front teeth have been fake for the last 36 years of my life. And until I post the pics and point it out, you probably have never even noticed. 

But I knew it. And they bothered me. 

It was a flaw. 

One, that to me, stuck out as big as if it were a third eye in the middle of my forehead.  And I longed to have it fixed. So today, I did. 

And Dr Erica Fisher and her staff at Family Dental Care did a fabulous job!  I am ecstatic at how it turned out. 

Here is the smile I've had for the last 9 years-which is the last time I had the bridge re-done. And you will probably not notice what I hate about it-but if you look, you'll see how my 2 front teeth are HUGE compared to the teeth on either side of them. I feel like I look like a chipmunk.  

See-chipmunk teeth. 

Today-in stages:

Carbocaine injected in my gums pre-pulling of the old bridge. 

And this is your mouth on meth...lol. 

No seriously-the missing the middle tooth is where my permanent one was knocked out. Over the years, I've had the other two shaved down for bridges. 

Nice huh? 

Finished product!  I love it!!  

See how perfectly lined up they are?  

I seriously am over the moon with how gorgeous they turned out. 

Now, I'm sure some of you are thinking I'm a vain bitch complaining about a few uneven teeth. But inside, it really bothered me every time I looked in the mirror.  

It was a flaw. 

A superficial flaw. 

A cosmetic flaw. 

And I hated it. 

And now it's fixed. 

And I can't stop smiling. 

(Or running my tongue over them because they are so smooth and even now!)

So let's talk flaws. 

We all have them. 

Some are cosmetic, like this one. 

And I'm sure nobody, not even my husband, can understand how much it bothered me. Or that it even did. 

But it was my flaw. 

My crack in a perfectly smooth surface.

My third eye. 

And I took the plunge to fix it. 

To make it prettier, better, to make my smile what I've always wanted it to look like. 

Some flaws are not cosmetic like this one. 

Some are character flaws. 

Being judgemental. 

Big flaw. 

I've got that one too. 

I jump to conclusions when I see people. 

Heck-when I see a person with a mouth like mine in that picture up there, I automatically assume they do drugs. 

Or don't have good hygiene. 

I don't stop to think that maybe their sister knocked their teeth out and they haven't been as fortunate as me to have parents who could afford dental care to fix them. 

Big character flaw. 

And one I am working to fix. 

Every single day. 

One that we all have. 

And one that we can all work on. 

That cheesy saying about  "be kind, for everyone you meet is fighting a battle you know nothing about"  Wendy Mass the Candymakers 

Well, I've always tried to live like that, but I'm not perfect and I've been judgy and condemning. 

Flaw. 

And only I can fix that flaw. 

It was easy for me to fix the cosmetic flaw I had. It will be harder to fix the character one. 

But every day that I look in the mirror and smile and see that one thing that bothered me was fixable, I know that is one more day I have to work on my other flaws. 

That I have another day to be less judgy. 

Less condemning. 

Less assuming. 

Wouldn't the world be a wonderful place if all our flaws could be fixed in 5 hours?

With each smile, I know that it's my opportunity to continue working on my personal flaws.   

And my opportunity to be kinder. 

And my opportunity to help someone else fight their battle I know nothing about.  

I encourage everyone to think about their personal flaws. 

Cause we all got 'em. 

And if we all worked on them one smile at a time, this world would be a much better place. 

Thanks again Dr Erica and Jenna and Kim and everyone at Family Dental Care!  

Rawley Re-cap

While Hailey is back in the OR having her tonsils taken out, I figured I would do a little update. 

Rawley life is as crazy, hectic, hair-on-fire, hot mess express normal as usual. 

In a nutshell: 

Ethan had two admissions so far this year-doing awesome now. Asthma under control.   Endocrine has decided his little testes have not dropped enough and stayed down-so off to urology surgeon Dr Murphy in October for probable surgery.  

Parker finished his sophomore year (barely) just turned 16 and just got his driver's permit. He has decided not to play football this year, but focus on his grades and choir and is working towards raising money for a choir trip to Austria next spring. Starts his Junior year in about a month. 

Hailey graduated from Staley with the Gold Medallion degree-the highest honor in the NKCH District.  She is off to University of Arkansas in 30 days to major in Biology with plans to attend Medical School and become a Pediatrician that works with special needs kiddos like the bald kid. She is also enrolling in the Air Force ROTC program through UofA. 

Brian is still working days with the KCPD at the Shoal Creek Division Station and it is his 21st year with the department.  He is also working with another company doing fraud investigations and claims cases-which is setting him up for his retirement job. 

I am working full time again at NKCH and love being back with all my awesome co-workers!  I am 3 years cancer free and counting. 

We took a fabulous family vacation in June to Florida. Spent a week on Universal property and had an absolute blast at the parks! I rode more rides than I did the last time we went because I figured it was 'now or never' and I'm living and looking forward with no regrets and no missed experiences. Even if that experience was only Dr Doom's Fear Fall!

 And I loved it!! 

Parker even took on some rides he wouldn't do last trip!

Spent a few days in the Tampa/Clearwater area-gorgeous beach BTW and had the best seafood ever at Frenchy's! 

Most of all it was a whole lot of family time spent laughing, and fighting and just being crazy weird together before Hailey is off to college. 

Awesome memories were made!

Perfect timing because the Surgeon just came out and said Hailey Jayne did fantastic-tonsils were huge and full of holes and puss pockets and it was a good call getting them out before school. 

Now to get my loopy girl home and settled before I head to the cancer center for a shot. 

I promise, pinky swear, swear on my children's lives I will update this blog more often.  

As a matter of fact, I will be updating again later today or tomorrow, so stay tuned!  

 

Summer Vacay 2015

I wish I had better service to blog, and when I get sat down somewhere with some time and the ability to load all my photos I will bore you with them all. 

Long, long, long story short: we made it to Florida via car with few issues. I mean, after all, would it really be our life if there weren't some sort of drama???

I'm just happy the tray attached to the Pilot hitch holding all our luggage and E's new $10K wheelchair didn't fly off on the highway somewhere. 

We've run around a lot since we got got here and today me and the boys are enjoying Islands of Adventure. I'm blogging in the child swap room of the Jurassic Park River Adventure ride with the bald kid while Brian and P get all wet first. 

Hailey came down with strep-I'm sure all her "I'm all graduated, 18yrs old, outta high school, almost to college, working enough to have a little spending cash, staying up late" days have just caught up to her and she's worn out. 

Needless to say, she will join us tomorrow as we probably hit Magic Kingdom. All I can say is that I cherish having these days with my family, and appreciate all my hubby's hard work to get us here. 

Now it's my turn to get wet!  

This little bald boy of ours.....

It's been a whirlwind of weeks around the Rawley household. Days run into nights into weekends into weeks and then this happened:

A note came home from school that Ethan was standing with very little assistance from his OT. 

What!?!?!  

Gotta see it to believe it, and this picture came home the next day. 

I cried. And cried. And cried. 

All happy tears. 

10 years 11months we waited for this day. 

We listened and nodded and smiled as educated people told us this day would never happen. 

And now I'm nodding and smiling watching this boy prove them wrong. 

He totally takes after me in the stubborn department. 

And here he is being silly with Hailey at home.  

First he wouldn't put his feet down and support his weight. 

See how his feet are crossed and he's letting Hailey do all the work?

Then he decided to lock his knees and stand up. With little support from Hailey. 

Then I think we all cheered and he started laughing and buckled those long legs into a heap on the floor.  

Fast forward another couple weeks and this note came home from school on Thursday. 

4 days before his 11th Birthday. 

And I know you probably can't read this, but it basically says Ethan communicated pain and its source to his teachers today at school. 

He answered a series of Yes and No questions on a program on the iPad and he was able to tell them his head hurt from his glasses and that he wanted them off. 

10 years, 11 months, 26 days. 

And the bald kid told them what was bothering him. 

Again, 10 years, 11 months and 26 days of us using our best guestimates at figuring out the bald kid came down to his eyes/head hurt from his glasses and he wanted them off. 

Guess it's time to take the bald kid to the eye doctor for some new glasses. 

I suppose this time we will let him pick out his own.