The Birthday.

Ethan had a wonderful birthday.  He went to school and got to have a little party with some other classes.  For his birthday dinner, we went to IHOP because Ethan's favorite food of all time is the pancake.  We had many friends join us to celebrate!  Overall, Ethan had two cupcakes, three pieces of cake, five silver dollar pancakes, and a quarter of my stacked pancake.  Do you sense a love of cake theme here?  LOL


The cake, a half sheet surrounded by cupcakes.  It is supposed to serve around 70  Yeah, there's none left...


You think he likes his cupcake?

Madison gave a very special birthday toast to the birthday boy...

Photo and video editing at www.OneTrueMedia.com

{video}

Taking a very important birthday call from California


WIPED OUT!

Since Ethan was too wiped out on his birthday to open presents, he opened them the next morning.  He got some great clothes, money for his Disney Fund,  and a Buzz Lightyear! 


Having fun with my present


LOL.  I think he looks so big here, though.

Scott and I took Ethan to Toys R Us after his pre-op appointment yesterday for his birthday balloon and present.  While there, we went back to the bikes and stuff.  Ethan has a new wish list...


(He is actually signing "want" in both of those pics)

Four Wheeler?

And...his new little pool.  We have had the big blow-up pools in the past, but they are just too hard to keep clean!  This is perfect just for him, and he LOVES it! 


Great birthday for Ethan!

NINE!

...then, 45 minutes later, you were here- forever holding our hearts. 

Happy Birthday to our little man, Boog's, Booger Butt, Bubs, Bubba, Bubby, Sneaker, Buster...Ethan. 

First picture.

The one and only picture Momma has with her little boy after he was born.

Daddy looks like he doesn't quite know what to do with you there in the nursery.  I think that he was just in shock that you were actually real!  :)

The polaroids that the EMS team gave me before they took you on your first road trip.  Unfortunately, it was to the children's hospital an hour away from home. 

My sweet boy, you have been through an incredible journey of life so far!  You are such a fighter and have so much determination (on your terms).  Anyone who meets you loves you.  You have lost 7 of your baby teeth, with an 8th very loose.  Maybe today is your day to lose it.  Tonight, we will celebrate with you at IHOP for dinner so that you can eat as many pancakes as you want. 

I am having a hard time with you turning 9.  It is hard to explain, but I think it has a lot to do with the fact that it is your last year before you turn 10 and enter the double-digits of life.  It's all good, Bub's.  You're going to rock out Year Nine just like you did Year One, Two, Three, Four, Five, Six, Seven, and Eight.  Your Daddy and I thank God for blessing our lives with the honor of having you as our son. 

Happy Birthday my lovey boy. 

♫Happy Birthday to YOU!♫
♫Happy Birthday to YOU!♫

♫Happy Birthday Dear Ethan!♫

♫Happy Birthday to YOU!!!♫

Nine years ago today...

I was on maternity leave, anxiously awaiting Mr. Ethan's arrival.  I was relaxed and ready.  I got to talk to my sister, Kim, on the phone and go over all of the "has this/that happened yet?" questions.  I went to get my nails done by the fabulous Robin (miss those nails!) and my toes touched up for the occasion, cuz you know- pretty toes is the first thing the OB sees!  LOL.  I was having contractions, but nothing consistent or worrisome.  I remembered that I didn't have a nursing bra yet, so off to the mall it was.  Afraid to eat since I just knew I was going into labor, I had a cappuccino blast from Baskin Robbins.  I had my friend, Jessie, come over to help me with some things when the contractions started getting closer and closer.  When Jess was timing them and said that they were three minutes apart, we knew that we would be going to the hospital that night!  But, it was a Thursday, which meant FRIENDS and Whose Line Is It Anyway.  I was determined to not be one of those women who show up at the hospital 2 cm dilated when they feel like they are farther along!  So, we waited, watched, and laughed...

About 10pm, we went in to the hospital.  Guess what?  I was only 2 cm dilated!!!  I feared that I was in for a rough ride.  Luckily, there were not any other mothers laboring that night or else I would have been sent home.  The nurses had me walk around for an hour.  So, I walked and rocked, walked and rocked, walked and rocked...an hour later I was 4 cm!!!  We were not going home without a baby!!!  :)

Over the next hour, I did the same thing:  walk/rock/walk/rock/walk/rock...midnight check = 6cm!!!

And, then my water broke....

Faulkner Woodworks on Facebook!

Faulkner Woodworks



Become a Fan!  Scott has been working SO hard on his projects for many years.  He loves what he does and is very passionate about what he does.  He has such a talent and heart for building pieces out of recycled/reclaimed wood. 

His Etsy store and link on this blog are still under construction, but will be up {hopefully} soon. 

~THANK YOU FOR YOUR SUPPORT~

Inspiration *tissue warning*

Thanks Marlene for reminding me of this amazing duo!

Have you ever heard of Team Hoyt?  If so, then you already know what an inspiration they are!  If not, then prepare to be inspired...and, maybe shed a few tears.



And, another...


I could watch those videos over and over again in amazement and awe. 

What Would YOU Do?

Last night, ABC aired their program "What Would You Do?".  They play out scenarios with actors while being filmed by hidden cameras.  Some segments have included:  An abusive man with his bruised girlfriend in a restaurant- do you say anything?; Airline pilots getting drunk at a bar before flight- do you say anything?;  Man lures drunk girl- do you step in?  Last night, one of the segments was titled "Woman Berates Grocery Clerk with Down Syndrome".  Please watch:



Now, ask yourself, WHAT WOULD YOU DO? 

This is why we fight so hard against the "R" word.  It is used to berate people, and IT IS NOT OK!  So, do all of us a favor who have a loved one who is the easy target, please please please STOP using the "R" word, and please do not be silent if someone is being abused such as in this scenario. 

I wish that I could go to Brooklyn and personally give the women that stood up for Josh a big hug of thanks! 

PBG Update

Got the "thanks, but no thanks" e-mail this morning.  Guess it wasn't meant to be. :*(

The hardest part was telling Scott, who after being told let out a big sigh and hung his head with a bit of discouragement/disappointment.  I would be lying if I don't feel like I have totally let the family down.  I know that I could have done the job applied for and I know that I could have done it well. 

Onward...

(thank you to everyone who prayed, kept me in your thoughts, and asked for updates- I appreciate it so much!)

Giving Life

I have been donating platelets on a regular basis for about two months now.  Every other Friday (typically), I go down to the American Red Cross, sign in, go into a little room, answer some questions, get my iron checked, pick out a movie, sit back, relax, get hooked up to the apheresis machine, and enjoy my chosen movie.  I am doted on with warm blankets and can even get my face scratched, if needed.  I look around and see about 3-4 other people doing the same thing that I am....giving LIFE. 

I know that the platelets that I give can save up to three people.  If all of those 3-4 people can also save up to three people, that is 12-15 lives being saved over the course of two hours!  How amazing is that!?!?!?

Knowing that you are saving up to three lives is amazing.  You want to know what is even MORE amazing????  KNOWING that there is someone out there WAITING for YOUR donation because of a specific antigen that YOUR platelets match with theirs. 

Today, after my donation, I was informed that a man named David was waiting for my donation.  Today's donation didn't just go to the blood bank for the next available need, it went specifically to save David's life because of the antigen match.  I have to say that is pretty freakin' amazing!

Seriously, I have said it before, I will say it again-  Ethan is alive because of blood and platelet donors.  He received countless transfusions during his leukemia treatment.  Without the transfusions, he would not be here today.  It is as plain and simple as that.  Scott and I are forever grateful for his donors for saving our son's life.  We are forever grateful for those people who took an hour (typical blood donation time) or two (platelets) of their time, faced their fears of needles and blood, and made the decision to donate LIFE. 

Please, please, please- call the American Red Cross at 800-GIVE-LIFE and make an appointment, or go to http://www.redcrossblood.org/ to locate a blood drive.  I hate needles going into my veins.  I hate the nurses touching my arm to feel for my veins even more- it makes me cringe actually, but I do it because I am healthy and able.  A fear should not keep you from giving life! 

Ethan didn't have a choice to hate needles and opt out of the countless port-a-cath accesses.  He was afraid each and every time, but it was necessary to save his life.  YOU CAN DO IT, TOO, IN ORDER TO GRANT LIFE!!!  Get past your hang-up's about donating blood/platelets!  There are people out there that NEED YOU!  DO IT!  DO IT TODAY!!!!

*If you or someone you love has been blessed by blood donation, please comment!  Let people know how important it is!!!*

IEP/Eval TIME!

Happy Happy Joy Joy!!!

Last Friday was Ethan's IEP (Individualized Education Plan) and 3-year evaluation.  Last year's IEP lasted a little more than 3 hours, so I anticipated a longer meeting considering having to go over the evaluations, but it went for close to FIVE hours!!!  OMG.OMG.OMG.

I am fortunate to have an awesome IEP team for Ethan.  Among those people is our Carolyn- yep, shout out to our favorite, most awesome-ist case manager EVER!  ;-)  She is there to have my back and support me through these wonderful meetings that sum up my son on paper with goals and labels.  I hate labels. 

Labels....ugh.  I am not, nor have I ever been the mom that doesn't care what label is slapped on Ethan just so he can get more services.  My opinion is that if the child needs a service, he should get it based on his need, period, not because of some label attached to the end of his name. 

A good portion of the meeting was spent on the evaluations and label choice.  There are a number of different labels available to the Exceptional Children (EC).  Some are:

• ID-Mild 
• ID-Moderate
• ID-Severe
• AU (Autism Spectrum)
• MU (Multiple Needs)

ID = Intellectual Disablity

Whether you fall under the ID-Mild/Mod/Severe category depends on how you test and where your IQ falls.  Ethan has been under the ID-Mod label even though he is in the Functional Primary (severe) self-contained classroom.  I did not want his label to change to ID-severe and I was pretty clear about that.  The LEA rep (http://www.specialed.us/pl-07/pl07-ieppro/07-team1d.html) was great, but she asked me why I didn't want Ethan's label changed to ID-Severe.  This opens up a bit of discussion that is somewhat hard to explain, but is pretty much this:  there is NO test out there that will ever accurately gauge Ethan's IQ.  I do not feel that Ethan's intellectual abilities are severely affected, moderately yes, but not severely.  And, the main reason is purely personal.  When you look in Ethan's classroom, you see four other little boys with different abilities, but you don't know what their disability is.  When you look at Ethan, you KNOW he has Down Syndrome.  I can only speak for myself, but I would venture to say that any parent of a child with Ds out there would not want their child to be the face of the severe side of Ds.  Do I celebrate Ethan every single day?  Ab-so-freakin'-lutely!  The fact is that if I let Ethan's label change to ID-Severe, it would be a heck of a lot harder to get it bumped back up to ID-Mod and then our options would be significantly reduced. 

The other option was AU.  Is Ethan on the Autism Spectrum?  Yup.  He was diagnosed with PDD-NOS a year and a half ago.  Do I think that he is severly affected by autism?  No.  Neither does other people in the special education profession, so I didn't really see how he could be labeled AU.  The back and forth discussion between myself and the rest of the IEP team went on and on, all about a frickin' label.  I hate labels.

After the extensive deliberation, Ethan's label was changed to AU.  I was assured that the AU label will be better for him in terms of access to different methods and classrooms.  And, as much as I hate, hate, hate labels- this will, supposedly, be best for Ethan.  And, at the end of the day, it is what is best for Ethan. 

One specific part of the papers that I had removed and changed was that the psych report came back that Ethan had "very low intelligence".  Um, no.  Anyone that knows Ethan can contradict that statement, so I refused to have that statement in his IEP.  It was changed to say he had cognitive limitations.  Now, to some of you that may not seem like a big deal, but it is to me and that's all that matters.  HA.

On a positive note, Ethan was exited from school PT.  Ethan has met his physical therapy goals!!!  It was so amazing to see GM (Goal Met) on his progress reports!  So, here is a public shout out to Diane, Denise, and Della- his school PT's throughout the years, YOU GALS ROCK!!!  Thank you for your continuous determination to help Ethan attain the goal that we have met today. 

Oh, and we documented (once again) that Ethan does not respond well to high praises, so to keep it limited.  HAHAHA.  Gotta love that boy.  And, I do!  ♥♥♥

Deep Thoughts

I have been in deep thought lately.  It is not over one thing in particular, but a mishmash of things...mostly friends and church and how they pertain to Ethan. 

This has been on my mind for a while, but it was right in my face a week ago at a small group gathering.  We were surrounded by friends and their children in a beautiful home and backyard.  Laughter and good food.  Friendships growing together.  Children playing together.  And, Ethan was alone. 

My baby was alone.  Did he care?  Not likely.  But, I cared.  And, it broke my heart.

So, I started evaluating my own "friendships".  Are they really considered friends or just acquaintances?  Do these people call just to chat?  Do they want to get together for coffee?  Do they want their kids to play with Ethan?  Is this a search for significance?  Maybe.  I don't know.

I just know that the older that Ethan gets, the harder this gets.  It gets harder to watch everyone else grow up and have friendships while Ethan is alone.  No playdates, no birthday parties, no siblings- alone.

I have reached out to people, trust me.  I'm tired of it, honestly.  Life is life and it is what it is.  That doesn't mean that it isn't hard some days.

The love I have for my son bursts from my soul.  It is also why I get so crazy emotional when it comes to him and my hopes and dreams for him.

Anywho, too much to say, too many thoughts to get it all out.  Maybe I will try again another day.

Job Interview

Tomorrow morning, I have a face-to-face job interview with Pepsi Bottling Group.  I have already had the phone interview- actually, I had the phone interview while in New York.  The interviewer asked me if it was a good time, and I told him as long as he didn't mind the occasional sirens, we were good!  ☺

I have friends that work for PBG, so I know that it is a great company to work for.  They actually have a great benefit package that, I am told, begins on Day One of employment. 

So anyway, I am just asking that you say a prayer for me.  If this is a job that God wants me to have, then I have faith that it will all fall into place.  I have to admit, though, that I am having a bit of anxiety about going back to work.  But, again- I have to have faith that it will all be ok.

Napping

I am not sure if I will ever not love watching my son sleep.  I know for a fact that I will never deny a snuggled nap!  Ethan was so sweet today- he climbed up on my lap, curled up, grabbed my face, gave me multiple kisses, and he went to sleep. 

Needless to say, my motivation to get things done while he napped went into dreamland and I am perfectly ok with it.

Special Olympics Spring 2010 Games

This past Tuesday, we arrived at Kentner Stadium at Wake Forest University for the Special Olympics Spring 2010 Games.  When we got there, Mary was asked if she had any students that could run the torch with someone from the police department.  After some quick thinking, Ethan was chosen!  Oh my gosh- just two years ago, we were at the same stadium with a walker, doing our best to get him to stay on his feet and walk, and this year he will be assisting in the opening ceremonial torch run!!!  Can we say "Proud Mommy Moment"?  ☺

Ethan and Mary made the newspaper!

{Torch Run Video - Don't pay any attention to the annoying arm interfering with the shot toward the end of the video, LOL.  I love how there were people I didn't know, cheering Ethan on!}

Always happy when Daddy is around!

Waiting for the next game!

On the move!

Giggles!

He was actually pretty good at this game!

Making baskets!

Proud Daddy & Son!

He was really good at this, too!

On Wednesday, Ethan participated in his first "official" events (you have to be 8 years old in order to officially participate).  His first event was the softball throw.  He placed 5th, which may have been by default in his bracket because there were some awesome arms that threw before Ethan!  And, I don't encourage throwing much, LOL.

Almost ready to throw the softballs!

On to the next event!

His second event was the one that we had looked forward to the most- the 50m assisted walk.  The weather was beautiful, but B-R-R-R-R COLD!!!  The temp was fine until the wind blew- *shivers*.  This didn't make for a happy camper, AKA:  Ethan.  Even with being grumpy and tired, Ethan did a great job and placed 2nd place in his heat!!!  We are all so proud of Ethan and his improvements with his walking!  I would like to send a shout out to Dr. Fuchs, Ethan's neurosurgeon, for de-tethering his spinal cord and making it possible for Ethan to compete in a walking race for the Special Olympics!!!

{Video of 50m event!}

Ethan refuses to stand or even sit on the podium- maybe next year...

Congratulations to all of the athletes!!!  What a pleasure to see all of you competing!

Spring School Picture

If it were Wednesday, I could have posted as a Wordless Wednesday, but it's Thursday so here is Ethan's Spring 2010 school pic.  I ♥ it.  Ok, so his hair could have been less out of control, but his face is perfection.  That is our sweet, angelic son.  That's the face he gives before giving kisses goodnight.  That is his expression of love.  I love that it was captured. 

NYC

Last Wednesday, I boarded a plane with two other gentlemen from church for New York City.  We were on a mission...literally.  Ha. 

It was a harder trip for me than I expected it to be.  I mean, c'mon!  I have been to Africa for crying out loud!  How much more outside of  my box can I get!?!?  Yeah, um, apparently a LOT more!  We spent our time in the Jewish communities.  I did a little bit of homework on the Jewish faith, but not enough.  My heart breaks for those that think that Jesus was a horrible, horrible, man!  At least in Africa, the people had open hearts for the love of Jesus.  It was a very hard trip for me.

I was the only female on the trip, which didn't help.  The men I was with were awesome, that's not it- I just could have used a little estrogen companionship to decompress in the evenings (my room was on the 5th floor all by myself and the guys were on the 3rd floor where they had each other).

We got to see so much of NYC!

• Battery Park
• Ground Zero :*(
• Wall Street/Financial District
• Statue of Liberty in the distance
• Central Park/Columbus Circle
• Times Square
• Rockefeller Center (went to the Top of the Rock!)
• Harlem
• Queens
• Brooklyn
• Grand Central Station (and countless other subway stations!)
• Little Italy
• Chinatown
• Borough Park 

We ate great food- Italian, Russian, Ukranian, Israeli, and the great Dunkin Donut.  Scott still says that my mission trips are unfair since his trips did not have good food.  LOL.

It's a lot to take in up there, but a great city.  I made new friends and was even able to get a visit from some Downsyn friends!  What a treat...

By Sunday, we were ready for that hour flight home!  I missed my family so much!  Ethan even seemed to be happy when he saw my face again.  Makes a Mama happy, yes it does.

OSA

AKA:  Obstructive Sleep Apnea

Ethan definitely has it.  I took a call from his ENT a couple of hours ago to go over his sleep study results.  So, basically anything between 0 and 5 episodes in an hour is considered normal;  Ethan had 23.  That puts him in the moderate OSA range.

If Ethan were a "compliant" child, we would be looking into getting him a CPAP, but that is obviously not an option for Ethan.  Other options include:  tonsillectomy, palette extension/expansion, and tongue reduction.

Ethan's tonsils are hardly enlarged, so we will likely have to consider all of the other options outside of the CPAP.  The whole tongue reduction thing sounds so weird to me, and I don't think it will help us with his feeding issues- it will likely set us back even more, but I also can't risk the long-term affects of him having OSA either.

Why yes, I do believe I just vomited...

http://newsmax.com/US/florida-aborts-wrong-fetus/2010/04/12/id/355459

Headline:  Florida Doctor Aborts Wrong Fetus in Twins

The gist:  Couple do IVF with an egg donor.  Twins conceived.  Boy Twin suspected to have Down syndrome and possible heart defect.  Girl twin not chromosomally enhanced.  Couple opt to selectively abort Boy Twin.  Doctor accidentally aborts GIRL twin.  Doctor loses license over botched abortion.  Couple aborts Boy Twin, ending pregnancy.

So, um...yeah, I do believe I just vomited.

Let me get this right...it was ok to KILL your son, but you're distraught over the KILLING of your daughter? 

Seriously, these people should not be allowed to conceive ever again!  Like another friend put it- babies are not like pizza toppings, you shouldn't go into having children with the idea you can just send it back if you got the wrong toppings.

Makes me so flippin' mad!

Awesome Observation

I haven't had Ethan's stroller in the car for months now.  Granted, he *is* too big for it anymore, but if we really need it, he can still ride in it.  But, we haven't needed it.  Why?  Because Bubs is walking SO well!!! 

What a wonderful, happy, joyous, awesome observation if I do say so myself.  ☺

Jumpin' Bean

I took Ethan over to the mall the other day so he could "jumpa jumpa".  For being Spring Break, the mall wasn't that crowded and Ethan was able to get on the bungee jumpers pretty quickly.  He always acts like he is going to freak out at first, but once he gets going he has a great time!  ☺

Curious George LIVE!

Curious George LIVE! came to Greensboro last weekend for a show.  Ethan loves the character, but doesn't watch the cartoon, but I still bought tickets anyway.  I figured it could be an early birthday present for him (his b-day is in May).  I guess since I bought so early on, I was able to get amazing seats in the 3rd row on the floor.  One of our friends from Ethan's old school, Abby, came along with us.  Abby used to give Ethan CG gifts all the time, so I thought it was pretty perfect that she was able to go with us! 

I wasn't sure how Ethan would react to the show- he's hit or miss with stuff like that.  I used to take him to Disney on Ice, but he could care less so I don't take him anymore.  But, this was different because it was a character that I knew he actually liked.

After facing a rude event employee, we made it to our seats on the floor.  I sat Ethan in his chair and he then managed to slip through the hole in the chair, falling and hitting his head/scaring him.  That basically set the tone for how he would be for the day.  :(  He refused to sit in his chair anymore, he wanted to sit on the floor.  Well, he wasn't going to see anything sitting on the floor, so I had him in my lap, and he fought me 70% of the time- even while watching the show!  Lil' Stinker Butt.  Oh well- I tried.  Overall, I think he enjoyed it.

Abby

 He took one of his many Curious George toys and decided to use it as a chew toy.

An attempt for a picture while being kicked out.  Ha.  Ethan wasn't having it.

With Abby.  I ♥ this sweet girl.

Thanks Abby for going with us!!!  ☺

Pandora

If you don't know what Pandora is, then you simply must 

go to www.pandora.com!  

Music for home or your iPod...

music, music, music!!!  ♥

Subway in Mariposa Funny

It seems that my precious little hometown of Mariposa stands divided on an issue- whether Subway can bring its business to town. There are two Facebook pages that I know of. There is the No Way! No Subway in Mariposa and the STFU, Subway Will Not Hurt Mariposa.  Yes, to Subway in 'Posa!  My personal opinion is that Subway should NOT be in Mariposa.  Part of Mariposa's charm is its historical roots and locally owned businesses.  There are plenty of fabulous food establishments (minus Burger King) that are locally owned and operated with much higher quality food (IMO) than that of a major food chain.  I don't know how Burger King was ever approved in the first place since major franchises are supposed to be "against the rules" of the town, and I am still very disturbed to this day about the demolition of the Frost Shop. 

Anywho- I was telling Scott about this dilemma going on and he starts going on about how California is broke and can't afford it.  Um...huh?  What does that have to do with Subway?  Then, the lightbulb went on.  LOL.  Yes, dear...Subway Sandwiches, NOT a SUBWAY. 

 Oh.My.Gosh.  This would REALLY put Mariposan's panties in a bunch! 

Sigur Ros - Svefn-g-englar {Sleeping Angels}

Has anyone else seen this? My sister, Kim, sent it to me this morning. I had never seen it before. I found it interesting how so many people in the Down syndrome community refer to their loved ones as an angel and that is exactly how they are portrayed in this video.

Svefn-g-englar

{Lyrics in Icelandic}

ég er kominn aftur
inn í þig
það er svo gott að vera hér
en stoppa stutt við
ég flýt um í neðarsjávar hýði
á hóteli
beintengdur við rafmagnstöfluna
og nærist
tjú tjú
en biðin gerir mig leiðan
brot hættan sparka frá mér
og kall á - verð að fara - hjálp
ég spring út og friðurinn í loft upp
baðaður nýju ljósi
ég græt og ég græt - aftengdur
ónýttur heili settur á brjóst
og mataður af svefn-g-englum

English Translation 

 http://translation.conveythis.com/Icelandic/

I come back into you it is so good to be here, but stop short of I move about in the below sea hýði the hotel connected directly to the electric table and feeds tjú tjú but Biðin makes me break producing risk kick me and call on - have to go - Help, I spring out and peace in the air I baðaður new light green and my gadgets - unlinked untapped brain placed on the chest and mataður of sleep-g-angels

Beautiful Montage for 3-21

Make an on-line slideshow at www.OneTrueMedia.com

Beautiful babies.  Thank you, Rebecca!

3 - 21 World Down Syndrome Day

3-21.  Three copies of the 21st chromosome.  Down Syndrome.

Today, we celebrate the lives of those with Down syndrome all around the world.  The world.

Our handsome son, Ethan, was born into a world that frowns upon Down syndrome and other birth defects.  Our son has changed the thinking of many people.  Through his courage, tenacity, stubbornness, persistence, determination, and successes- he has shown that Down syndrome will not define him and that having Down syndrome is ok.  It is not the death sentence that others may make it out to be.  It is O.K.  I am more than ok with Down syndrome because that little 8, almost 9, year old precious boy of ours has taught me so much about myself that I probably wouldn't have known without him. 

As Ethan's parents, Scott and I are blessed and honored that God chose us with the privilege of raising him.

Uppercase Living®

Close to two years ago, I became an Independent Demonstrator for Uppercase Living®.  I didn't really push to be a crazy active demonstrator, but I was doing an Open House a month.  Then, things just tapered off and I was dropped as a demonstrator.  A month or so ago, I decided that I wanted to be a demonstrator again.  I have not taken the time to actually market myself and this wonderful product, so that is what I am going to do now.  :)

For those that don't know what Uppercase Living® is, it is a company that makes vinyl expressions where you can make your space a reflection of the unique individual you are. Whether you identify with a deeply motivational thought, a beautiful embellishment, a bold image, or a combination of these, Uppercase Living® expressions let you be who you are and let you express that uniqueness in your surroundings. This is the art of self expression.

Currently, Uppercase Living® has a Buy TWO Get One FREE promotion going on.  Everyone that I know that has Uppercase Living in their homes LOVES the product.  Please visit my website at http://kris10z.uppercaseliving.net  and browse the catalog.  You can host a catalog Open House and earn free product, host an Open House in your home, or order directly from my site.  Please feel free to contact me anytime if you have questions and please feel free to repost.  :)

Thank you!

Happy Birthday, Drew!

Today is my baby sister's birthday.  I am not sure how long I will get away with referring to her as my baby sister since she is now 24, LOL. 

Dearest Drew,

I remember when Mommy was pregnant with you and I remember waking up the day you were born and Kim telling me that Mommy went to the hospital to have the baby.  I remember being so excited to get you home!  Apparently, you were the subject of many "Show & Tell's".  Alanna will tell the story about how she remembers me getting up to share that you lost your umbilical cord and how that seemed like a really big word for a 4th grader.  :)

I love you, sista!  I am so proud of you and I miss you so very much!  Please come visit again...we will party like rock stars!  :)

I hope that you have had the most amazing birthday yet!     xoxoxoxoxoxo

Another ER visit

Gross.  I agree.  It's a bad picture, but that is black/tar-ish/coffee ground-ish blood from Ethan's nose.  It came out of nowhere.  I called the doctor and the nurse had never heard of such a thing in her 30+ years as a RN.  Great.  She suggests taking him into the ER just to be checked out.

We had Delaney's birthday party to go to and he was acting fine, so I showed friends the q-tips (yes, I had them in a ziplock for when if/when I went to the ER).  Everyone agreed with me that I should just take him in to be checked out.  I mean, having black blood sitting in your nose can't be good, right?  My main concern was if something was going on internally and he was refluxing up through his nose.  I had to take him in.

What ended up being the fastest trip to the ER in the history of all hospital visits, the doctor simply says that he had a nosebleed and gave us our discharge papers about nosebleeds.  I am not totally buying this idea, but whatever...

This morning, Ethan has a nose full of dried black blood again.  I called his ENT at home and left a message.  I also plan to take him in tomorrow.  It's so weird.

Ideas are welcome.

Why not switch schools?

Seems like the obvious choice, right?  Not so easy.

1)  We *love* Ethan's teacher.  If it weren't for her, we'd be gone.  Where?  No clue.  Homeschool maybe.  I just don't know.

2)  Our placement now is the only severe & profound class within a typical elementary setting with age-appropriate peers.  The other two options, while good schools, are completely segregated- not really what is in Ethan's best interest.  And, in this day and age, that shouldn't be how it is anymore! 

We are in a no-win situation.  The higher administration of our school district are not on our side.  They are the ones making these ridiculously crappy decisions.  I am thinking of ambushing the next school board meeting...

*Screaming, Screaming, Screaming*

I just updated my Facebook status.  It says:  Kristen Faulkner is frustrated.  Yeah, that's an understatement.  My FB status the other day said:  Kristen Faulkner hates, hates, hates E's school.  Yeah, that's also an understatement.

School:  If you are just joining the class, I will catch you up quickly.  We moved her from CA for a 5-star developmental day school.  Ethan aged out and graduated.  Ethan was then placed in a severe & profound self-contained classroom withing a typical elementary school.  I was anxious and nervous about the placement but ended up being extremely happy with my decision for him to go there.  Our school district decided to transfer the classroom from AWESOME school A to POS school B.  Why?  Their reasons still make no sense whatsoever. 

So, we are moved to POS school B.  It takes a half hour to even get there from our house.  POS school B has a history of drugs and weapons.  True story.  Last year, cocaine and marijuana were found in the hall and a kid brought a handgun to school.  This year, 2nd Graders- yes 2nd graders, brought knives and threatened to kill another kid because he was Mexican vs. being Hispanic.  There are gangs present.  So yeah, someone please tell me WHY THE FRENCH the powers that be in our school district thought it was a good idea to take kids who are non-verbal, in wheelchairs, mouth everything, and otherwise can't defend themselves from AWESOME school A with NO history of drugs or violence to a POS school B where they are at risk of finding drugs and ingesting them?  Or, how about a little gang initiation?  Sounds like and easy hit to me- the kids who can't defend themselves.  FRUSTRATION.

Then, the administration just needs to be bopped across the head.  Maybe then, they might actually get a clue.  They have no idea what people-first language is.  They use the "R" word like crazy.  I helped Mary make a Disability Awareness Board and I even secured a speaker to come and talk to the kids about disabilities.  The principal was going to say no to having the speaker come and then she agreed to having him come and talk for five minutes.  FIVE FREAKING MINUTES!?!?!?  FRUSTRATION.

The assistant principal is in the classroom yesterday morning and she argued with our assistant teacher and Mary over how things should be done for our kids.  Ummmmm, who has the degree in Special Education???  Riiiight.  She proceeds to talk to all the children like babies and like they don't understand anything.  Then she saw Ethan's modeled looking skin and says, "What's that rash on his arms?" (mind you, I am standing RIGHT THERE).  We all ask what she is talking about.  She repeats her question and adds, "Why does his skin look like that?".  "Who?"  Mary asks.  She then points and says, "That one".  Oh.My.Freaking.Gosh.  THAT ONE?!?!?!?  Um, That One has a name.  I seriously had to bite my tongue.  That WILL be addressed.  FRUSTRATION.

So there you have my HATE, HATE, HATE for E's school. 

***********************************************

Feeding Issues:  Ethan's feeding issues continue to get worse.  Scott, Mary, and I are all at a loss at what to do.  Insurance continues to deny to send Ethan to CHOP all while he continues to get worse.  Throwing food, mouthing everything, not chewing, choking hazards...FRUSTRATION.

Calgon anyone???

Zhora and an iPod Touch

Grab This Button
The button will take you to a fundraiser that Renee just hosted for our friend, Lisa, who wants so badly for Zhora to have a family go scoop him up and bring him home.  The fundraiser was to add more funds to Zhora's grant fund at Reece's Rainbow and also enter a drawing to win an iPod Touch.  You can see Kennedy pick the winner in the video (SO cute!!!):

Make an on-line slide show at www.OneTrueMedia.com

I have a huge smile on my face.  I love that close to $700 was raised for Zhora!  I love seeing the Garcia babes!  And, I love winning.  :)  Oh, and Kennedy...I did the same happy dance you did!!!

D-LISH!

There are a couple Food Network shows that I *love* to watch and get ideas.  One of which is Barefoot Contessa.  Scott doesn't like her very much because she is kind of snobby, but I would love, love, love to eat one of her meals AT her house in the Hamptons...HA.  It all looks so yummy, but yes- she is snobby.  You have to use GOOD vanilla, or GOOD olive oil, homemade chicken stock...blah, blah, blah.  Anywho, there was an episode that I just loved everything and I knew that I could make it all:  Individual Meat Loaves, Brussel Sprouts Lardon, and Buttermilk Mashed Potatoes.  I opted to make my mashed potatoes like I always do because they are just plain yummy.

My mom makes a really good meatloaf, but I have always been nervous to make my own.  Why?  Who knows.  Probably the same reason that keeps me from making real chili or beans in the crock pot. 

Anywho, this has to be one of the best dinners I have ever made!  Seriously.  We ate leftovers for lunch and I think it was even better today!  Yum, yum, yum...D-LISH.

In a nutshell...

We were all sick, as previously posted.  Breathing capacity was taken down to nothing for me.  I am going to have to totally rebuild my endurance with C25K, which makes me sad, but I am feeling much better than last week!

So, things have gone like this:

Sick family, Spread the Word to End the Word link turned into quite the verbal attack on my Facebook, Shep had his stitches out, Shep had heartworm treatment, which required a two-day hospital stay, Shep's home but can't have ANY activity for a month...I think he may need doggie Prozac soon, Scott had heart attack symptoms at church and was sent via ambulance to the hospital for an overnight stay.  Ethan had his urology follow-up with Dr. Wiener at Duke- had a renal ultrasound which was horrible, like wrestling a marlin.  Good news is that his kidneys and bladder are doing well!  YAY!  Bad news is that until Ethan can verbally tell us what he is feeling in order to go to the bathroom, we won't know if the tethered cord caused permanent damage.  Ethan will need a renal u/s annually for several years. 

Yes, I snuck in that part about Scott.  He doesn't really want a big fuss made about it.  He is FINE.  His heart is fine.  Chances are that he had a panic attack that mimicked a heart attack.  Still, no fun and very scary for all of us.  We are very thankful to our friends at church who stepped up to watch Ethan until Mary could get there to pick him up.  And, of course, to Mary for keeping Ethan while I was at the hospital with Scott.  We are very happy to know that all EKG results and coronary CT results were fine...no abnormalities or blockages of any kind.

Fun week!  That's a BIG nutshell!  LOL!

Sinus Infections from Cold After a Day Suck...

Just sayin'....again.

Colds suck.

 Just sayin'.

Love Offering

I am collecting for a Love Offering for a friend in need right now.  For privacy reasons, I can't post about the family here, but I would be happy to give full information privately.  Please e-mail me at faulknerkd@gmail.com.  Please consider a donation, even a dollar and tell your friends.

{Chip In Widget Above}

Shep: Good/Bad News

The vet called me yesterday.  She says, "I have good news, and I have bad news".  *sigh*  "OK".

GOOD NEWS:  The tumor removed from the neck is free and clear.  All cancer cells removed.  Yay!

BAD NEWS:  The tumor removed from the belly is NOT free and clear.  There are still cancer cells in the surrounding tissues.  And, it will continue to spread.  There is no other surgery to do- the vet took as much tissue possible.  If she would have taken any more, she wouldn't have been able to close him up.  The only other option would be radiation and we are not going to do that.  It is a good thing that she took the tumor out though.  If she hadn't, he ran a really high risk of having a ruptured tumor and then having a bleeding issue internally which would equal having to put him down.  Boo!

So, our cancer-free happy dance was short-lived.  He still has it and he has heartworm.  Now, the question is whether to proceed with the heartworm treatment or not.  Our vet is posting Shep's scenario on a Vet Board where over 20,000 vets come for help/opinions of other veterinarian professionals.  She is not one to do anything to a dog that  is not in his best interest and I certainly appreciate that.  I should hear back from her next week on that.

Overall, Shep is doing really well!  He is not messing with his incisions at all.  Of course, we don't think that he can really reach them anyway.  Shep has been hanging out with Scott during the day that way he feels back to normal and Scott can keep an eye on him.  Thank you to everyone who has voiced their concern for our Shep!

Shep's Surgery

Scott and I took Shep in this morning at 8am for his scheduled surgery to remove the mast cell tumor from his neck.  It was hard to leave him, but we knew that he was in good hands.  I started to cry on the way to school and Ethan kind of grunted at me like he was telling me it would be ok.  

I was told that a heartworm test would have to be done pre-op, so we expected that.  What we didn't expect was for him to actually have heartworm.  :(  I then had to wait for the doctor to decide what to do.  This required a chest x-ray to make sure that his heart wasn't too enlarged to risk surgery.  The radiologist also said that there was not any sign of metastasized cancer...YAY!!!  I got the call around 11:45 that everything looked ok and that they were starting surgery.

Close to two hours later, I got the call that Shep was out of surgery and doing well.  I didn't expect it to take that long to hear from them, but they said that he did well and they were considering keeping him overnight.  

On the way home, I stopped in to the vet's to check on Shep.  He was just waking up and looking good!  The doctor came out and said that she had a confession.  ???  She says that she decided to remove the tumor from his belly too!  ...FOR FREE!!!  So, now I can semi-officially say that Shep is CANCER FREE!!!  {pending pathology reports}  

Thanks to everyone who said a wonderful puppy prayer for Shep today!  We appreciate it!  I was able to bring Shep home and he ate some.  He is having a hard time figuring out how he can lay down without laying on his belly.  :(  I am anxiously waiting for Scott to get home so he can help with Shep since Shep has always listened to Scott better anyway- that's what happens when they went to work together every day for close to 10 years! 

Neck incision

Underbelly incision

Poor puppy just wants to lay down but can't quite figure it out with a big slice on his belly.  :*(

The incisions are even bigger than I anticipated, but he is cancer-free, so it's ALL GOOD!!!  :)

Marriage Tune-Up

 

Last night and this morning, Scott and I joined hundreds of other couples for a Marriage Tune-Up conference/seminar.  It was put on by Jeff & Debby McElroy.  We were able to attend thanks to our friends, Janet & Jeff Pemberton, who invited us as their "guests", otherwise we wouldn't have been able to afford to go.

Some topics discussed:  Conflict Resolution, Intimacy, Spiritual Leadership

The speakers were awesome!  They were so funny and used great stereotypical examples to get their point across.  We feel very fortunate to have been able to go!

Instead of thinking about how 6 years ago today, Ethan was being diagnosed with leukemia, Scott and I were able to sit in a church, holding hands, learning new skills to better our marriage.  How awesome is that?  :)

Shep News

Wednesday night, Scott asked me if I had time to take Shep to the vet on Thursday.  I told him I would make time and then wanted to know what was wrong. Scott proceeds to tell me that Shep has a lump on his neck that is bothering him and he has been itching it.  I made sure that he showed me where it was so I knew what to show the vet.  It was a big red bump.  I was pretty sure it was a spider/bug bite.

Thursday morning, our vet got us in at 11am.  Shep was weighed, up three pounds to 79.6!  Aye, aye, aye...

Doctor came in, looked at the bump, squeezed it a little and some pus came out so she was pretty much guessing it was a bite like I was.  She took Shep into the back where she could lance and drain it.  When she came back in the room, she says that there wasn't as much pus as she thought there was going to be and she was going to look at it under the microscope.  When she came back in, she had a look of worry and began her sentence with, "Now, I am not a pathologist but..." {you know that is ALWAYS a good sign when pathology is mentioned- not}.

"It's a tumor".

"Um, WHAT!?!?!  {with look of shock}"

"Yeah, and this one worries me.  It's different than his other tumor in his chest that we are watching".

So, um- yeah.  For the second time in the month of February, I sat alone in a doctor's office and was told one of my babies had more cancer.  {Ethan was diagnosed with leukemia February 13, 2004}  This one is worrisome, too.  It is a mast cell tumor and because of the location and rapid increasing size, it needs to be removed in order to ensure that it doesn't metastasize.  The vet was ok just watching the other tumor Shep has because it is a soft-tissue sarcoma with less risk of spreading quickly, whereas this one is already proving to be on the rapid track.

Shep will be going in for surgery first thing Monday morning to remove the tumor.  He should be able to come home that afternoon, but will have one heck of an incision.  So far, he has been taking his meds well, so the irritation and infection around the tumor is definitely better.  Poor puppy has to take two antibiotics and three Benadryl's twice a day, and a pain pill once a day.

Praying that everything will go smoothly on Monday!  Shep still has so much life in him- we have to give him this chance, we just have to.

In Remembrance: Livvie

Still missed as much today as two years ago.

(Video in post for those on reader)

Birthday's...

I haven't been around the computer to be able to post two very special birthday's that were on February 5th.  Soooo....

~♥~

 ♫Happy Birthday to you, Happy Birthday to you, Happy Birthday Dear Jeff,

Happy Birthday to YOU!!!!♫  I'm so sorry you're old...ha.  

~♥~

♫Happy Birthday to you, Happy Birthday to you, Happy Birthday Dear Olivia, 

Happy Birthday to YOU!!!♫

~♥~

Two people who will always mean the world to me:  My Dad and Olivia. I wasn't able to talk with my Dad, but I did get a text in to him mid-morning- didn't want to wake him up and make him a Grumpy Old Man.  HA!

I was able to spend the evening with Karen and celebrate what would have been Olivia's 10th birthday.  I wore Olivia's Cinderella tiara and picked up her birthday cake as usual (even though it looked like the cake we normally get, it did not TASTE like it- BOO).  This year has been harder than last year...please pray for Karen as this time of year is an overwhelmingly reminder of the most  painful and heartbreaking moment in her life.  ~THANK YOU~

Just one of the kids

I am about to do something that I said I would never do in blogland.  I am going to post the same picture more than once in one post.  I never understood why that was done, I mean- I saw the picture the first time.  LOL.

So, it snowed on Friday/Saturday and Scott made a snow run off the back deck.  Our neighbors came over with their girls to sled.  The kids were having a lot of fun making the Mommy's and Daddy's cater to their fun.  The kids would take turns going one by one, but then we started having them go tandem.  Ethan went with Rachel and they both had the biggest smiles afterward.



So, why did I tear up tonight when I mentioned it at small group?  Because we don't have play dates.  It's just complicated...anywho.  Our neighbors kids don't see that Ethan is different at all.  I think that they may have asked a question like "Why doesn't Ethan talk?", but it has never been an issue.  We give them an answer and they say "oh" and go about playing.  If anything, they think that Ethan is pretty cool because he has a swing in his living room and a trampoline!  :)  When they play, they tend to play in their own corners so to speak- not necessarily together.  Sunday, they played together.



They played together.  They smiled together.  They laughed together.  They had fun together.  And so it was captured- he was just one of the kids.

Urban Dictionary

All around Facebook, people are posting their Urban Dictionary definitions of their name.  I have decided to just do a blog post.  LOL.  So, whenever I need to make myself feel awesome, I can just come back to this post.

Urban Dictionary - Kristen

Slang for "most awesome girl ever"

usually extremely beautiful. can surprise you at what she can do. very outgoing. can be emotional at times, but mostly just wants to party!


Very hott girl that you won't seem to every forget about,amazing personality and great figure. {damn skippy!}

amazing


An amazing person, not likely to ever leave your thoughts, always to the be te only one on your mind . Incredibly beautiful, nice, smart, caring, and all-around great . Her eyes gleem with a radiance of a thousand stars, her lips draw you in, like magnets, her love is like life, without it, you surely cannot live.


being of extreme beauty, class, and creativity.

also happens to be pretty rad.

1. E-karma's Queen.
2. Extremely nice person.
3. Awesome

The girl who makes you want to be a better man. Shes incredibly smart, funny, and stunningly beautiful. You are often thankful for every second that she is a part of your life and lament the times that you arent talking to her because with her every second is like being in heaven.Often a girl with spunk that other girls fear.Hates drama usually and normally doesnt do well with guys who cheat.Loves to go out an party. Never doubt her cause shes always changing and you dont ever truely know what shes thinking.

Ok, you can stop laughing now....

Reposting: The R Word

My friend, Michele, posted the link to the following article on Facebook and I have to say that the author's opinions are pretty much to exactly my feelings. I find myself telling people how offensive the 'r' word is to me, but I also find myself not wanting to offend the offender. ?!?!?! I try to be the best advocate I can for Ethan and for those with special needs, but sometimes my words are not as on point as Ms. Liane Kupferber Carter. Please read.

The R Word
by:  Liane Kupferberg Carter

http://www.huffingtonpost.com/liane-kupferberg-carter/the-r-word_b_443627.html

We were trying on hats at a department store counter when my childhood friend said it.


"I never know how to wear these," she said. "I'm such a fashion retard."


I was shocked. I said, "We don't use that word."


She turned red. "You're right. I am so sorry," she said.


And she was. Truly embarrassed. Not only because she is a kind person, but because I am the parent of a child with autism.


The thing is, she is about the last person I ever expected to hear it from. She is one of the smartest people I know, and I'm not talking about her Ivy League education. She's an active community volunteer. She works in soup kitchens and bakes her own bread. She's passionate about social justice, someone who thinks long and deeply about everything. She treats my son with unfailing compassion and respect, and has taught her two children to do the same.


So to hear the R word slip so automatically from her lips was as shocking as if she had taken off her clothes and danced naked in Times Square.


Recently my mother-in-law forwarded a joke that had obviously been making the rounds among her friends. It was a silly story about children who mistake words they hear, not worth repeating here. But the subject line of the email was "retarded grandparents." I took a deep breath. Then I clicked on "reply all" and wrote this message:


"For years I've received jokes like this and kept quiet, but one of my New Year's resolutions this year is to speak up, so here goes. As the parent of a developmentally disabled child, I find the use of the word "retarded" personally offensive. So-called jokes like these reinforce the discrimination and intolerance children like mine face daily. 'Retarded' is not a synonym for 'stupid.' It's time to retire the 'R' word from everyone's vocabulary."


My mother-in-law emailed back, "Actually I didn't even notice the title of the joke. But you are right about this."


Well yes, that's my point. No one notices. Not even the people who know and love my son. That's how ingrained that word is in our culture. It's a knee jerk reflex in people's vocabularies. No one else replied to my email. I imagine that many of her friends who received it probably felt sorry that my mother-in-law has a humorless prig for a daughter in law. And it's true. I am humorless when it comes to this.


People use the R word as an all purpose put down. It's hateful trash talk, the ultimate playground zinger. The Special Olympics has been campaigning aggressively against the word since the film Tropic Thunder, which introduced the term "Full Retard" to the cultural conversation, was released last year. Even President Obama has been guilty. Not of using the R word, but of viewing those with disabilities as something to joke about, when he told Jay Leno on "The Tonight Show" that his poor bowling performance was like "Special Olympics or something." (Obama later apologized for his remark.) Or Pulitzer Prize-winning author Thomas Friedman, during interviews on both CNN and "Charlie Rose", who repeatedly said that our involvement in Afghanistan "is like adopting a special needs baby." Just last week, White House Chief of Staff Rahm Emanuel was quoted using the phrase "f--ing retarded," in the Wall Street Journal.


I am not the first to write about this, and I won't be the last, either. I'm not trying to be the word police. And I know that if we banish this word from everyone's vocabulary, something equally noxious will probably take its place. But the malice behind this word is palpable and ugly and heart constricting. Do you think kids with intellectual disabilities don't know they are being put down when someone calls them that word? That they don't feel the insult and disdain?


The R word has been retired by medical and social service organizations. It's time everyone else does too. This isn't about political correctness. I am asking for no less than a basic cultural shift. People need to understand that the R word is as offensive to persons with intellectual disabilities as the N word is to the African American community. The old saw "sticks and stones will break my bones but words will never harm me" is patently untrue. Words do wound.

Winter Storm 2010

Photo and video editing at www.OneTrueMedia.com

The last time it snowed, I looked into getting Ethan some snow bibs/boots so he could stay out longer, but since accumulated snow is not the norm around here, we figured that we had our snowfall for the year. Well- it snowed this past Friday. The approximate amount was around 8 inches and we still don't have any bibs/boots for Ethan. :(

We put a dozen layers on him and headed out. Scott spent the morning turning the back deck into the launching pad for a snow run. Our neighbors came over with their sled and we all had some sledding fun! We found that Ethan did much better going down the ramp backwards because he bends his body in half and just enjoys the ride.

After naps, I went and picked up Mary to come back and sled again. So, Ethan had a full day of sledding fun. The weather peeps are calling for a possible wintry mix again this weekend and we still have icy roads. School is canceled again tomorrow. I wouldn't be surprised if school is out until at least Thursday because the residential places are still pretty icy for the buses to run through. Looks like no Spring Break for the kiddos with the way things are going...

{For those on a reader...there is a video at the top}