DeYoung's Reality!!

There’s a new movie coming out.  Tropic Thunder boasts some powerhouse comedic stars who you’ll no doubt recognize.  Jack Black, Ben Stiller, and Robert Downey Jr. are the big moneymakers in this one.  The folks at DreamWorks are banking that we, the American public, will be so drawn by this threesome that we’ll flock to theaters and gladly fork over 10 bucks or so for a couple hours of entertainment.

What they’ve neglected to tell us though, in all of their million dollar advertisements, and promotions and movie hype, is that some of the language in this “film” will most definitely be very hurtful to a large percentage of the population.

Do you remember the movie Napoleon Dynamite?  I do, though I’d like very much to forget it, not because it was offensive, but because it was dumb.  One of the reasons I remember it though is because for months after that movie was first made popular, I saw t-shirts for sale that had phrases like “Vote for Pedro,” and “Ligers Rock,” emblazoned across the front of them.  That’s the beauty of marketing I suppose: when done right, it sends an unforgettable message to consumers.

You can imagine then, how completely repulsed I am by the fact that t-shirts are being made to help spread one of the messages Tropic Thunder endorses.  One day soon you too might see someone walking around with a shirt that says “Full Retard” in bold letters.

Because, haven’t you heard?  It’s funny to disparage those with intellectual disabilities.

Or not.

When my son was born it was bad enough that I had to worry about the looming possibility of him not breathing correctly, seizures, and countless other potential medical disasters.  What made the situation worse though was the ignorant and hurtful comments from people I trusted.  People in the medical community who took an oath never to do harm, though harm is exactly what they did when they called my sweet baby boy  “mentally retarded” and hinted that sometimes kids like this end up in facilities.

It wasn’t until Cole reached a certain age when we were able to see that although God sent him to us "special" (as my best-friend likes to refer to these kiddos) he has presented us with a wealth of stories, all heartwarming and truly inspirational, and although he may be intellectually disabled, he is VERY MUCH SO HERE, VERY MUCH SO LIVING! He is a person playing a starring role in our family. He may talk a little different, we may have spent our Easter in an Ambulance this year because of a Grand Mal Seizure....he may take a few more medications than the neighbor kids, or channel his frustrations differently.  Matter of fact - he can't hear out of his left ear. BUT believe me, he hears!  Please don't label my son...not even if you are HOLLYWOOD.

Throughout history these people we’ve come to know as “special” have been discriminated against in more ways than we’ll probably ever know. 

I think it’s time that we put a stop to that right now.

Please stand with me, with my family, and with my son as we demand dignity and respect for people all over the world who were born into bodies with limitations.  People who struggle to accomplish tasks that might seem commonplace to you and I.  People with feelings and souls who deserve far more than the hateful labels this movie has given them.

Please don’t spend your money to patronize a movie that ridicules my son, and others like him. 

There is a country song lyric that says it in a way better than I: You’ve got to stand for something or you’ll fall for anything.

Join me in standing up for people like Cole.  Your stand won’t soon be forgotten.

So I turned 31 yesterday,  celebrated the day with my family....

Enjoyed some great food, a cookie cake with the neighbor kids, and invaded Nicole's pool...(thanks for sharing while you are away!)

 

Somehow I stumbled across this article that talks about a study in which British scientists are tracking how bees hunt in hopes of figuring out how serial killers choose their victims.

Um.  Huh?

Sometimes I just feel like someone is somewhere tokin' on a doobie and saying "Duuuude, I'm so wasted! We should so totally write a research proposal. Yeah!"  It just seems so random.  I mean the article starts about by saying,

"Just as bees forage some distance away from their hives, so murderers avoid killing near their homes, says the University of London team."

Uhhhh-kay .... Is this whole comparison the basis for the research?  Because, if so, I'm sure I can get some British research dollars to figure out the link between dolphins and gang violence because,

Just as dolphins resist anything restrictive around their middles, so do gang members avoid wearing belts and pants around their natural waist.

It's not that I don't believe bees should be studied. In fact, I think bees are quite fascinating. Really! I've always thought that. I have a totally love/hateyourstinkin'guts relationship with bees. It's been this way since I was a child. I love the behavior of bees. I love their hierarchy and their drippy honeycombs. I love that I was told once that a bee shouldn't be able to fly (something about the weight to wing ratio) but since no one ever told the bee about his inability, he flies anyway. I love the fuzzy wuzzy bees and I love the honey bees.  I love the hum they make and I love the shape of their hives. There are a lot of things to love about bees.

However, I do believe one of the worst things in the world that that can happen to you is to get stung by a bee.

I know.  You are thinking I'm daft because who would possibly list that as one of the WORST things in the world? You may be thinking how I could put that above all the really horrible things that happen like cancer and murder and brussel sprouts, but let me say this...  If you were allergic to them like me, you may agree.  I swell up so much after being stung it's truly almost comical.  Like in Charlie and the Chocolate factory, I have to go to the juicer.

AND... in addition to everything else, bee stings have the added awful bonus of killing the bee.

Now come on.  That just seems ridiculous.  I have a hard time believing this is a good defense mechanism.  It just feels so counterproductive.  Sure, I stepped on you, Bee, but you didn't have to kill yourself just to get me to move.  It's just all so dramatic.  So drastic.  It would be like me ripping my head off and throwing it at someone to get them off my porch.  Effective? Maybe.  Dire consequences for dinner that night?  For sure.

Perhaps, I shouldn't be so critical of the bee researchers.  I mean after all my years of being stung, who I am to judge?  Maybe they're onto something. Clearly, they have some brilliant insights. Just check out this quote:

"understanding how bees are recruited to flowers is much easier than understanding the complex thoughts of a serial murderer," Dr. Raine said.

Wow.
Thanks, Doc. That's money well spent.

 

 

10 things that I have learned in 10 years:

 

1. A sense of humor is necessary.

2. I don't agree with the "never go to bed angry rule". For us, sometimes a good nights sleep puts things in perspective.

3. Compromise takes on a whole new meaning when you get married.

4. Inside jokes help keep a marriage interesting...

5. Bringing up the past is not fair when fighting (yes honey, I'm still working on this.)

6. When I'm sad, sick, mad, happy or afraid - Brian is the first person that I want.

7. Kids are WONDERFUL, but complicate a marriage. (mommy & daddy dates are a must.)

8. Getting married young is hard...BUT gives you an opportunity to grow up together.

9. Hugs still feel as good as they did 10 years ago.

10. and mostly, I have come to know that I married my best-friend and that our love for eachother is unconditional; together we can make it through anything.

 

Thank-you honey....I love you.

While going through radiation, I would often just sit and jot down notes about how I was feeling, what I was thinking or use the time as a short writing exercise.  A way to keep my writing skills sharp.  I would create little challenges and then try to meet them.  I would make myself both drill sergeant and cadet.

5 minutes on the color teal - GO!
Tell a story about beets - GO!
How many things in nature can you think of that are orange? GO!
(there are a lot of them, by the way)

I never thought much about those impromptu exercises. They've just laid there unread and uninspired in my old notebook.  In fact, I had completely forgotten about them until today when I reached for a current notebook from my desk drawer and pulled out an old one instead.  As I was flipping through it trying to find a blank sheet of paper  I came across what I assume started out as an exercise during one of my many vigils in the waiting room.  It was written just a few days before my first treatment.  When my spirits were still pretty high and my humor was intact.  I was still in that stage of pre-treatment when I thought the key was to attack this thing head on and partner with my body in getting rid of it and cheerio good fellow we’ll have this thing licked in no time at all!  (having no idea that 7 months later, we would still be fighting this battle virtually clueless on what to do next.)  But here is one entry into "The Notebook" that I found interesting... one I will use someday when I write my book.

Old people.
This room is filled with old people.  Even the young people are old people. There is an young old guy with a hat and a dark mustache in the corner.  The guy is in the corner, not the mustache. He's falling asleep.  I guess he's waiting for someone or maybe he's just  found a nice place to take an overdue nap or it could be he feels like I do - exhausted - and doesn't have a notebook of graph paper and a mechanical pencil to keep him from drooling on his chin and doing head bobs. Wow.  He's a big head bobber!  Whoooosh forward .... Recover. Wooooosh back .... Recover.  A quiet rocker, a aged headbanger without the ipod and the heavy beat he slowly bobs.  Now less drastic.  Bob. Bob.            Bob.  Maybe he's dreaming of Whitesnake or ancient Deep Purple although his sox's hat makes me think more Bullet Boys or Warrant.  I'm not sure why.

But what the room lack in youth they make up for in attitude.  Hellos, conversations, latch hook.  It's not a bad place really.  For what it is.  Which is a bad placed indeed.

Funny thing is all the posters around the room show young people.  Young people smiling. Young people laughing. A 30 something lady with a sundress and a fun hat looking at the camera like isn't this just the funnest thing ever? If it weren't for the word CANCER on the poster, you'd think this darling was pitching ice cream or toothpaste.  The really sexy kind of toothpaste.  There is no way that lady on the poster has cancer.  If she did, we'd all want it.  Give me her cancer!  Damn!  That broad looks great! 

The headbanger is awake.  He woke up when the door opened. The door opened when his wife - I guess that's his wife -  came out of the back.  She has test results in her hand.  Those are test results.  Her head is covered with a bandana. And there are precious few hairs dangling from the back.  Those are the saddest hairs I've ever seen.  The two of them are tucked in that corner.  I don't think I would have really noticed them at all except she just  exhaled. It wasn't loud.  It was just a sound, a breath, an expulsion of air but I recognize it.  I know that sound. It's defeat.

I can hear them - headbanger and wife.  They are murmuring.  The two of them are talking.  We are all, the rest of us, not looking - we are all trying to give them a tiny bit of privacy there in the corner.  We have all become intent, engrossed in what we are doing. I'm writing.  The lady next to me is working a puzzle. The couple on my right is reading a copy of good housekeeping - both of them reading the same copy. And the couple next to them are studying a paper calendar.  We all do business while their world comes apart.

The murmurs have stopped.
They are getting up to go.
I can't look up.

"Beverly,"  the nurse says softly from the window, "we'll call you next week, okay?  Have a good weekend."
The last line is said with compassion.  I finally look up.

The headbanger is crying.

I hate this damn place.

 

Randy Pausch died today.  It was not unexpected.

Here is his last lecture.

http://www.youtube.com/watch?v=ji5_MqicxSo

It is worth watching the entire thing.  It is the BEST piece of advice I have EVER heard.  I was one of you, and skipped past this video when it was forwarded to me a few times...Than I saw his book in the store and realized it was a National best seller, I had to see what all the hype was about! In life, it's about finding the good in people, it's about making TIME for people that matter, it's about family, friends and following your dreams.  This man had it all right!

So I screwed up.  I take a few different medications...so when one runs out - I'm usually pretty good about getting it filled.  The problem is IF I don't, I don't notice in the handful of medications that I take that one is missing.

 

ANYWAY, one of my seizure medications is called Trileptal. I take this one 2x a day. So in short, I ran out and forgot to get it refilled for 6 days.  I think this is one mistake I will NEVER do again.  I was so sick, like flu sick.  At first, we didn't know what happened.  Until we finally put everything together.  My doctor said that is one medication you can't stop taking cold turkey.  OOPS. Your body has to be weaned, "yeah you think"?? I spent the whole weekend in bed.  Much of Saturday, all of Sunday and even part of Monday. I was sweating, shaking, vomiting - I suppose that would be called withdrawls. I would never make it as a druggie... Holy Moly, I'm too much of a wimp.  When laying in bed I kept thinking I can’t – nor do I have any desire to – engage…. in anything.  Conversations are beyond laborious, television is painful, reading is an impossibility.  Please Lord, don't let any neighbors stop by, please don't let my husband decide we need to have a "real" conversation.  I'm thankful that doing drugs is a path I never took...or for now, not taking my drugs is a road I will forever avoid. 

 

*on a side note my husband had friends over for a bon-fire on Saturday night, I didn't want to seem snobby, so I walked out to visit for a few minutes. MISTAKE...my body was so messed up trying to get over not having the medication, and than having it at full strength again, that I looked at the fire pit and thought I seen little men dancing.  I realized I was the probably one of the only one's not drinking, but for sure the most unstable one there...I went back inside to watch George Lopez!

This picture represents the oldest and youngest of men that have captured my heart!

I hate that I feel like I even have to write this blog....

Sometimes it's the people whom are suppose to be the closest to you, that cause you the most heartache.  I have been told in the past that having such a "raw, exposed, open" blog could create controversy.  Usually, I take things with a grain of salt, consider the source and keep rolling forward...The HUNDREDS of e-mails that I get weekly are what keep me blogging about my journey.  I feel led in what I share, I have recieved e-mails from Pastors, friends, strangers who have ALL said that they have lived through similar situations...and are happy to hear that their emotions were shared in a similar way.  If my journey and talking openly about it can help one person, I think that is wonderful! I have now met some friends who have given great advice on how to better understand the disease of alcholism that my mom struggles with. I was attacked for sharing what I have about my mother, told that I should honor her and continue to show love and support.  Truth is I DO love my mom, and if I have led anyone to believe otherwise I sincerely apologize.  But everyone gets to a breaking point, a place where they scream, "I can't take this anymore"!!!  I suppose combining my illness, with my moms, my knee (which is now SO much better, thank-you for all the continued prayers!) my husbands finger, stress from Employers, and a dose of summer energized kids -  & I just snapped. I'm human, I stumble, I say the wrong thing -I fail everyday in being the best follower of Christ. I don't write to put myself on a pedestal, I write for a release.  I journal to maybe help someone who may follow on a similar road.  I try to share my mistakes, so maybe others will learn lessons the easy way.

 

My integrity has been attacked, if anyone else would like to know "Why we whine and beg for money"?  Let me explain.  For public record and to address anyone who reads this, I'm stating once again...WE ARE NOT SEARCHING FOR GIVERS. WE DON'T BEG, WE DON'T CHEAT, AND WE CERTAINLY DON'T TRY TO DECIEVE. WE are NOT begging for your money!!!!!! We certainly appreciate all that EVERYONE has done for us.  As I have mentioned numerous times....prayers are more than enough! We believe in the power of prayer.  I have thanked tons of people for continuing to follow our journey, and pray for us. That ALONE is more than we could hope for!!!!

 

I have also been questioned how we can afford a Boat & Snowmobile & Caller ID with me not working.  Well the TRUTH is the snowmobile is worth less than $300, was a gift from a family member and has provided HOURS of entertainment to our family.  The boat was a gift from Papa.  So selling it, is not an option.  We live 10 minutes from the lake, it is a way for us to enjoy some family time and has been a great stress reliever for us. (and as funny as this sounds we can't always afford the caller ID, the phone is the first bill we skip if we have to skip one.  (why many of you have called and it has said our phone has been "temporarily disconected")  :)

 

Now for those of you who have questioned what EXTRA'S we have, that we don't need..let me share with you just a few things that we HAVE sold to stay afloat and continue to pay off bills...We have sold Brian's Fishing boat, that he owned for over 6 years, our family camper (that was the perfect size for our family and we have had it for over 5 years.)  We have sold our big screen TV, Brians Truck, several of my dress/work clothes, a rocking chair, high chair, crib and changing table set.  I went to a gold party and sold all my gold jelewry except my wedding ring and "mother" necklace.  So please don't accuse us of taking other people's money and enjoying a lifestyle full of extra's.  We do have our priorities in order, and are doing our best.

 

I have been accussed of making everything up for sympathy and money, stating that I was NEVER sick or NEVER in the hospital.  I think there is enough people, including 2 pastors who came to visit me at the hospital that can verify I was.  But for those of you needing proof of medical bills, and my tumor diagnosis I will leave you with these photos.

Hello Everyone.  Emily Mackie with Tastefully Simple has offered to do a fundraiser to help our family.  In order for her to track the orders, everyone will need to place their order through this link.

 

 

 

 

 

Not sure if this is a good thing or a bad thing....in light of all the mess with Brian's finger, my appointment for Ann Arbor has had to be re-scheduled.  In addition this nero-surgeon is "out of network" which means that 20% of the bill will be our responsibility if/when I go see him.  (Thought it might be wise to make sure that Brian is employeed, we have insurance and have more than the $13 we have in our savings account before I make the trip.) When I called to reschedule the appointment and ask about how much I would be asked to pay up front - I was told that I was a "priority patient" and that they would be able to reschedule me asap. "priority patient"...left me feeling like this:

stink.  They have put a BIG target on my husbands back and are trying everything in their power to make our lives horrible. (and Ultimately fire my husband.)  They have sent Brian back and fourth to the Doctor for releases, everytime he returns to work providing them with what they asked.  Than tonight, they sent him home.  Apparently, they found a policy that he is violating by working.  He is on Hi-Lo, his release stated "return to full duty on Hi-Lo"!  Not good enough.  I'm struggling to remain calm. It's difficult when you work for a company and after 14 years, they still treat you like a number.  "Brian DeYoung clock number ***"  They have turned into a heartless operation, providing more help and optmism to the community than to their own employee's....makes me want to vomit.

I run in small enough circles that when I lose touch with someone who will forever hold a place marker in my heart, I have a general idea of the direction their lives ended up taking. I run into their mothers, their brothers or sisters, their old college roommates. Some I do better at keeping in touch with than others...very few I can pick up with from where we left off.  Fortunately, my friend Jeni was one of my best friends throughout HS. (I would dare say that during HS she was one of 3 people that I would tell anything too.)  She is an amazing person, and has done remarkable things with her life. After spending 4 years in the Marine Corp, she went to College and has become a "Wildlife Biologist" in North Carolina.  She has been visiting in MI for a few days, so we met for dinner last night. I almost felt like I was preparing for a first date...I had butterflies...I felt like I might barf in anticipation.  She is a successful woman, highly educated, hasn't entered "motherhood" yet....so she still has a body that is her own....I pictured her getting ready in a nice peaceful hotel last night...with trendy clothes, great jewelry and of course the best lipstick.  While I SERIOUSLY grabbed clothes out of the dryer that I sprayed with water to get the wrinkles out...stopped to buy some new make-up at the local "family dollar" did my make-up in the van.  Before leaving the house, I was sweating like a pig, hoping that I didn't stink, trying to quick gets the kids dinner, prepare things for the babysitter...find pj's for the kiddo's and still keep my hair looking halfway decent.

after getting ready in the van, and feeling as pretty as an old chubby mom was going to feel...

I headed to meet her downtown...I decided to bring her a little blast from the past. So I picked up the perfect picture frame and found a great picture of the two of us from my wedding nearly 10 years ago.  She loved it.

There is such a history with the 2 of us, a similar upbringing, similar struggles, similar curve balls...we were both very passionate about cheerleading, both proud band "geeks"!  We attended the same dances, actually shared a boyfriend.  She had him first :)  We laughed about this last night...he broke both our hearts.  They dated for 1 year and him and I dated for 4 years after. After he broke my heart I found myself saying to her "I'll never go through that again!"  And at first I didn't.  I found myself screening my calls to avoid second dates, never letting anyone get close enough to show any interest, frantically reaching for the door handle after a night out, so that the cute boy in the driver's seat couldn't lean in for a kiss lest he (or I) think there was more between us than the movie we'd just shared. It was like that for nearly two years, until time and distance did what they always do to a broken heart.  Until I met Brian. What a blessing that was!

 

Jeni and I shared so many good times -- hilarious, obnoxious, wonderful times -- we chatted about those too, those were so fun to remember because there were plenty of those then too.

 

She shared a little about her new love with me, wow does he sound perfect for her!!! (can't wait to meet him.)  She has deserved this for so long, I'm grateful for the peace that she now feels.  It was a wonderful evening shared with friends, it didn't matter how big my bum has gotten or if I had the trendy clothes, it didn't matter that we hadn't seen eachother in approximately 8 years...we laughed, we hugged, we remembered.  Thanks Jeni, I wish that we could do that more often!