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#SUDCAwareness

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"Piece," Love, and Keeping Austin Weird

The star of the day, Austin!

The star of the day, Austin!

Austin's wonderful family!

Austin's wonderful family!

Austin's brother loving on his mommy.

Austin's brother loving on his mommy.

Austin's mama getting her workout in. Ha!

Austin's mama getting her workout in. Ha!

Austin's awesome mama.

Austin's awesome mama.

The most thoughtful letter-(page 1)

The most thoughtful letter-(page 1)

The most thoughtful letter-(page 2)

The most thoughtful letter-(page 2)

A bracelet full of love.

A bracelet full of love.

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We love them! Thank you, Maria!

We love them! Thank you, Maria!

We love them! Thank you, Maria!

We love them! Thank you, Maria!

Bags of vroom vrooms for children at  Inova Fair Oaks Hospital .

Bags of vroom vrooms for children at Inova Fair Oaks Hospital.

Team Keep Austin Weird!! We love you, Austin!

Team Keep Austin Weird!! We love you, Austin!

We had a great morning at the AutismOklahoma PieceWalk & 5k honoring our little buddy, Austin!!

But first, let me back up a little bit and tell you about another amazing human being.

My sister, Gaust Ama AKA "Michelle" was selling some of my nieces' toys when she found out the buyer taught in an enhanced autism classroom. She donated the items as a way of spreading The Caleb Effect, and probably didn't think twice about ever hearing from the sweet teacher again.

They say actions speak louder than words, and if you Googled "thoughtful woman of action," Maria Casado's picture should appear from now on!

After receiving the toys, she and her kids put together bags of vroom vrooms in Caleb's honor and donated them for children at Inova Fair Oaks Hospital, but she didn't stop there.

While out shopping she replaced a bag of candy that was already in her cart in order to purchase more vroom vrooms. Then, she bought $20 worth of vroom vrooms to honor victims of the OKC bombing during our Oklahoma City Memorial Marathon project last weekend. If that wasn't already enough, her kids found out that only four names were left on the lists they chose and what did they do? "My boys felt bad that 4 people were left off so they took $2 each from their wallets." 😲

Do you think I'm finished with their random acts of kindness to a person they have never met and who lives 1,300 miles away? 
WRONG!

I received the attached letter along with two beautiful bracelets (again each item chosen with an enormous amount of care).

Today, after leaving the Piece Walk, I went to the post office to pick up a package. What did I see? Another kind envelope from Maria. This time it included lots of little Caleb Effect tags that we will be using to spread Caleb's love. WOW!

If ALL of these things weren't already enough to absolutely make our jaws drop and cry knowing The Caleb Effect really is spreading, Maria bought a globe for her class and they are now tracking all of the places in the world (all 50 states and 69 countries if you are curious) where The Caleb Effect has been!!

Maria, we only intended to come to the Piece Walk, hand out a few vroom vrooms and support our friend, Austin and his family, but you made today an even more special event. The kids loved handing out the vroom vrooms, and Austin's mom, Renee Hays said to tell you that she is never taking the bracelet off! 
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Austin's dad, Rob Brian, also shared this: 
"I want to thank everyone who made today possible. Whether you bought a T-shirt, stopped by for the garage sale, donated to our team (Keep Austin Weird), sent words of encouragement, or quietly prayed or sent positive thoughts our way, thank you from Renee and I.

People ask us how do we handle all of this every day. The answer is we just do. We don’t have a choice. What makes it easier is all of you. Your love and support is what gives us the positive energy to stay strong.

Today was clearly evident of that. There was a record number of people at the Piecewalk today. The energy and love that enveloped the event was so incredible. It reminds us that we are not alone in this. That Austin is not alone. That being weird is not a bad thing, but just the opposite.

Being weird is awesome. Being unique is a good thing. The Piecewalk is an event where weird and unique individuals are celebrated for who they are, not defined by how they act or look.

Thank you to everyone who participated today. Austin may not come up to you and say thank you, but I promise you today meant a lot to him. It meant even more to Renee and I."

https://piecewalk.org/team/keep-austin-weird/
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Ken Toey (Adam) and I bought t-shirts and made a donation today in honor of Austin, your students, a special boy in Colorado, and all of those who are impacted by autism. Weird is the new awesome and we are so glad we had a chance to be a part of this incredible event!

Thank you for heeding the call to be nice and for sharing Caleb with the world.

(Also, we already heard back from one of the vroom vroom recipients today.)

https://www.facebook.com/thecalebeffect/…/2078123205791090/…

#beweird
#benice
#peoplearefightingbattlesyouknownothingabout
#autism
#piecewalk
#SUDCawareness
#vroomvrooms
#actionsspeaklouderthanwords
#onekindactleadstoanother
#calebeffect
#itsworking
#thankyou

https://thecalebeffect.org/

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Week 4-Hi "Peeps"

Hey "Peeps!" This will be my last video for SUDC Awareness Month-2018. I didn’t even attempt to stay under two minutes this time, but I hope you will watch and see why this month is so important to me.

P.S. The 444 other kids I refer to in the video only include the numbers from the U.S.

P.P.S. Caleb’s death would not have been categorized as SUDC if we had not hired a private autopsy, but that is a story for another day.

#SUDCawareness
SUDC Foundation
#calebeffect
#peeps
#backdropfail
#Jedimindtricksyoucanusetopretendcoveredthewholebackgroundthecurtainitdid
#mybrainissquishytoo

Screen Shot 2018-10-25 at 10.51.41 PM.png

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Week 3-SUDC Awareness Month-Share the Facts

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Four years ago, Caleb was new to this world and we were just starting to come out of hiding from flu season to meet his sweet, new friends. 

Caleb was a very colicky baby but his youngest friends never minded. They loved holding and comforting him by rubbing the crown of his head and telling him it was okay. Caleb LOVED people, but especially babies and other children. I loved watching both the little faces excited to meet him and seeing Caleb's eyes light up in wonder. I wish I could bottle these moments and save them forever. These moments also hurt, because I also know I'm not going to get any more memories like this.

We tried to do our best as new parents, and some even considered us "helicopter parents" who were extra crunchy granola. After volunteering at The Children's Hospital at OU Medical Center for many years, I had witnessed too many newborns with life-threatening issues after being exposed to well-meaning visitors who swore it was "just allergies." We WERE extremely cautious about accepting visitors. We tried to do everything we could to keep Caleb healthy and comfortable. We used cloth diapers; I breastfed; went to the chiropractor, prepared fresh, organic meals when he started eating solids; made sure he saw his pediatrician for every ear infection and strep incident; kept him home an extra day after those sick days just to be sure. The list goes on and on. However, none of this mattered. Our healthy, happy, beautiful boy was still taken from us and no one knows why.

Through a lot of losses in my life, I really did learn to cherish as many moments as I could together. I cuddled him and neglected the house. We played in the floor with "vroom vrooms" and "flew" like an airplane. I never got tired of chasing him or pretending when he "found" and "scared" me from my hiding places.

I know Caleb is still meeting beautiful, new friends today, just not at all the way we wish. As week 3 of SUDC Awareness month arrives, the goal is to educate at least one person each day with the facts regarding SUDC. 

Please tell Caleb's story, take that lunch date with your friend, refill your coffee and instead of just talking about the weather, show someone Caleb's picture and ask them if they've ever heard of SUDC. Print one of these fact sheets; hang it in your office or bring it to your doctor's appointment with your kids (or share it with a medical professional or first responder). Caleb's picture is second from the right on the bottom. We know it is not always easy to discuss, but if you could share this with one person at a time, maybe someday healthy kids like Caleb will still be here to make more memories with their playmates. 

Since we are sharing facts this week, my fact of the day is that Sudden Unexplained Death in Childhood is a category of unexplained death, and 142 TEENS in the U.S. ages 15-19 years left behind their families and friends in 2016 as well. Those are just the 142 who were actually labeled into the SUDC category, so we know the number is probably much higher. Spread the facts and let us know where they are being shared. 

Thank you.

http://sudc.s3.amazonaws.com/AAA_Amazon/sudcliterature/SUDC%20One%20Page%20Intro%20Doc%20Pics.pdf?AWSAccessKeyId=AKIAJYVT3VLDMLUDFRZA&Expires=2145934800&Signature=M0m%2BKlqqgMJEWsrM8sGP4hS3AEY%3D

#sudcawareness
#calebeffect
#gomeetanewfriend
#sharethefacts

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Tuna, Street Papers and Kindness-Week 2 (continued)-SUDC Awareness Month 2018

I’m still catching up from last week but we squeezed in a few nice things when we were feeling better. We left lunches around town for people who are homeless or likely to have to skip meals. This one was left for someone on a bus bench.  #SUDCawareness   #calebeffect   #benice

I’m still catching up from last week but we squeezed in a few nice things when we were feeling better. We left lunches around town for people who are homeless or likely to have to skip meals. This one was left for someone on a bus bench.
#SUDCawareness
#calebeffect
#benice

I heard someone digging through the trash at a fast food restaurant so we left a couple of meals for this person. I tried to talk to them to tell them I had food for them, but they didn't answer me when I got closer. Makes me sad that people have to find food in these kinds of places just to survive. 😢   #SUDCawareness   #calebeffect   #benice   #EndHomelessness

I heard someone digging through the trash at a fast food restaurant so we left a couple of meals for this person. I tried to talk to them to tell them I had food for them, but they didn't answer me when I got closer. Makes me sad that people have to find food in these kinds of places just to survive. 😢 
#SUDCawareness
#calebeffect
#benice
#EndHomelessness

We bought a “street paper” from a lady who is homeless and gave her a lunch kit, too.    The Curbside Chronicle   #SUDCawareness   #calebeffect   #benice   #EndHomelessness

We bought a “street paper” from a lady who is homeless and gave her a lunch kit, too.

 The Curbside Chronicle
#SUDCawareness
#calebeffect
#benice
#EndHomelessness

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Random Acts of Kindness-Week 2-SUDC Awareness Month 2018

We know we are getting a late start for week 2 of SUDC Awareness Month, but it's Random Acts of Kindness Week! Sickness hit our house this week so we had to hide out at home and spread kindness by not spreading our germs to anyone else. We are no longer contagious so we are sharing Caleb's love and educating our community about SUDC. Come join us and do something nice this week as well! Use  #SUDCawareness  and get creative. If you need templates to include with your kindness you can print them from Caleb's website here:  https://thecalebeffect.com/kindness/   Also, it takes mail a while to make it all the way to Switzerland, but we love the fortuitous timing of this package! What will you do to brighten someone's day? #SUDCawareness  #SUDC   #calebeffect   #benice   #RAOK

We know we are getting a late start for week 2 of SUDC Awareness Month, but it's Random Acts of Kindness Week!
Sickness hit our house this week so we had to hide out at home and spread kindness by not spreading our germs to anyone else. We are no longer contagious so we are sharing Caleb's love and educating our community about SUDC. Come join us and do something nice this week as well! Use #SUDCawareness and get creative. If you need templates to include with your kindness you can print them from Caleb's website here:
https://thecalebeffect.com/kindness/

Also, it takes mail a while to make it all the way to Switzerland, but we love the fortuitous timing of this package! What will you do to brighten someone's day?
#SUDCawareness
#SUDC
#calebeffect
#benice
#RAOK

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A Category, Not a Cause-Week 1 SUDC Awareness Month 2018

3 weeks.jpg

Four years ago, I posted this picture. Caleb was three weeks old and I absolutely loved staring at his perfect face while he slept.

Today, this picture tears my heart out. Finding your healthy, happy child the way I did is the worst kind of hell I could wish upon anyone. Yet, in the U.S. alone, it is happening about 450 times a year. (See stats below).

A majority of the deaths that are categorized (because it is a CATEGORY of death and not a specific cause) as Sudden Unexplained Death in Childhood or SUDC happen when a child is sleeping, although this is not always the case. Some children have literally been mid-sentence or taking care of household chores when they became unresponsive and could not be saved.

The SUDC Foundation supports families all over the world who went from watching their child's beautiful face, to living and reliving their worst, haunting nightmare. I can post on our secret Facebook page and warn everyone of a diaper commercial airing during the holiday season that is a highly triggering source of trauma. I couldn't turn my TV fast enough when I saw it, but I had to shield my eyes and make enough noise on my own to drown out the dozens of babies sleeping to the tune of "Silent Night."

Maybe a simple commercial doesn't sound horrifying to you but to people like me, there are triggers everywhere in daily life that we now have to learn how to face. Most people are fortunate enough to not understand why sleeping babies could send someone into a panic, but I knew this group would and wanted to spare someone else the racing heart and flashbacks. I used to love nothing more than to look at my sleeping baby, but now all of those pictures I took are wrapped with highly charged emotions and heartache.

The government funds research on SIDS, but not one penny has been spent by them to try to figure out why older children are dying without explanation. Without the SUDC Foundation, I can't share this picture and have people who understand. Even writing this post, I have Caleb's picture moved to the bottom of my screen because it is too upsetting to see. I wish I could just be sharing what should be an innocent, tender moment, but my life is forever changed. The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research, and support those like me who are affected by SUDC. It is the 5th leading CATEGORY of death in toddlers; and even teenagers are not immune.

SOMETHING must be done, and I am encouraged to see everyone who has changed their profile pictures and liked the SUDC Facebook page. To learn more about the SUDC CATEGORY of death or the SUDC Foundation, go here: https://sudc.org/ or like their page here SUDC Foundation.

Based on 2016 statistics (the year we lost Caleb) provided by the CDC Wonder Database, those affected by sudden unexplained death, occurred in: 
-236 children ages 1-4
-30 children ages 5-9
-37 children ages 10-14
-142 teens ages 15-19

#SUDC
#SUDCAwareness
#SUDCIsACategoryofDeathNotACause
#SupportTheSUDCFoundation

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SUDC Awareness Month

SUDC Awareness Month.jpg

March is SUDC Awareness Month. The SUDC Foundation is the organization that is doing research to figure out why this little boy doesn't still have his forehead and little hand against my cheek. Losing Caleb without any answers stole the light from my eyes and the laughter from my face. SUDC stands for Sudden Unexplained Death in Childhood and I will be sharing more about this wonderful charity all month long. Feel free to change your profile picture and like the SUDC Foundation page to create awareness, too. https://sudc.org

#SUDC
#SUDCAwareness

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