4th Birthday Photo Session

4th Birthday Photo Session

Friday, June 8, 2018

Heavy Hearted Response

Today, they held the service for Noah Ashton.  Noah was a 6 year old with CHARGE Syndrome, whom we've known nearly his whole six years. Noah passed away in his sleep, for reasons unknown. The service was streamed online for consumption.  I was at work, so I chose not to login as no one needs to see me fall apart at work.  Our community has worked to rally around the family, and our profile pictures are all the same, and we posted photos saying 'CHARGE On Noah!'  It is one of the few ways we can embrace the family from afar, to let them know that we are there with them, trying to hold them up through this unimaginable time. 

Noah has been in every CHARGE Through The Year Calendar I've produced.  A gorgeous boy with the sweetest demeanor, and devilish look in his eye.  He has been a part of this path for as long as I can remember being on it.  I just can't even believe he (and Asher, and Kane) is (are) gone!  My heart hurts.

Here's one of Andi's photos:

An article in their local paper.
Father's 'shooting star' lived his best life > Medicine Hat News

Go Fund Me Page To Support The Ashton Family:
Go Fund Me Page To Support The Ashton Family

Our community has endured 8 losses in 8 weeks.  Three of them I followed religiously, for years.  These kids have been a part of my every day.  I send all families my love, but, I have to single out my closest three.  Ladies, I love you with my whole heart and I wish I could say or do something to take a smidgen of this pain away.  Tell you this, you want to escape and come hide out here for a spell, I will find a way to make that happen.  Just give me the word!  Seriously.  

Other than donating, how can you help?

Honestly, give blood.  I gave a pint today and lost a pound finally... I mean, there is an upside!!!  I was dehydrated, so her attempt in my left arm had a vein disappear.  So, although I look like a junkie with multiple holes in my arms, I felt that was the best way I could honor our friends.  

Treat yourself, treat others with kindness.  Give back. Donate. Donating your time is the most personal form of charity, as although we all can earn more money, we can't earn more time.  Maybe treat yourself better than you have been (cough, cough, Anna!)   These kids struggled through so much just to survive.  Cherish your health. Cherish your wellness.  Support those around you by being mindful of your footprint on everyone on the planet.  From that jackass on the freeway, to that extra-chatty lady in Subway who was probably just looking for someone to converse with.  Be good to one another.  And spread the word of CHARGE Syndrome.  It's not known enough... and awareness is one way we can help future families, future diagnosis, future Dr's and Nurses.  

Charge Syndrome Foundation  (Link To Their Website)

Charge Syndrome is a recognized pattern of genetic birth defects.  At one of the conferences we attended, it was explained that essentially, when the body was getting put together - the directions were lost.  So, with the road map lost, there are "issues"...  hearts with holes in them, or valves that don't quite work right.  Eyes with vision issues, mainly coloboma's.  Ears that don't quite hear.  Noses that need to be opened because the air-passage way was clogged with bone/tissue (choanal atresia).  Lungs that are in chronic attack.  I can go on and on...   Again, CHARGE is an acronym for potential issues.  From the CHARGE Syndrome Foundation website:

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Restriction of growth and development, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we’re not changing the name.

Give to the Foundation that supports families... that's huge. My friends started an amazing non-profit in honor of their son and they work tirelessly to support families in the CHARGE Syndrome community.  They have sent dozens of families to the past two conferences, which honestly is like going to Disneyland for us. Going to hang out with your tribe for a long weekend is probably better than Disneyland.  It's like one giant family reunion of people who just 'get it!'  CHARGE For Connor is another great way to support our community.  http://www.chargeforconnor.org

Lastly, did you remember that you can order your amazon.com stuff through a special website and it will donate a portion of your purchases to a charity of your choice?

Select 'CHARGE Syndrome Foundation' or "CHARGE For Connor"

Every little bit of funding and awareness can help us all.

Again, my love to the entire CHARGE Syndrome Community, especially my girls.... Lisa, Laura and Alicia.  Love you all.

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