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Down Syndrome Awareness 1

Down Syndrome Awareness Fact: Did you know?  Babies with Down syndrome have love muscle tone, known as Hypotonia, which is why it will take them a little longer to talk, walk and eat the same foods as others.   They work extra hard and they get there!

It never occurred to me how much having low muscle tone (or Hypotonia) can impact. Walking is the obvious one, but things like eating, swallowing, talking, etc are also harder for those with Down syndrome because of Hypotonia. Some things have taken a long time for Zeke to master mostly because of having “low muscle tone” but also because we’re pretty sure he has an extra dose of stubbornness! ? So we’ll keep celebrating things like eating an apple, independent steps and the day, *someday*, when we finally find a sippy cup that he’ll actually drink from because he does work so hard to accomplish these things that come pretty easily to many people.

Down Syndrome Awareness Month

October is Down syndrome awareness month! I’m a week behind in posting anything but I’m going to attempt to post some facts about Down syndrome and answer any questions about Down Syndrome in the coming weeks. While we celebrate Zeke and Down syndrome daily, October also happens to be Zeke’s birth month so we’re all about celebrating everything Zeke right now! Plus, its hoodie, pumpkin spice and football weather… who doesn’t love October?! I’ll get to more “official” facts but one of the most important facts is that when Zeke smiles he lights up the whole world.  (well, at least our world… I mean look at that smile.

 

Changes for 2018

After much soul searching, prayer and internal debate, I’ve made the difficult and scary decision to put my photography business on hold for the year. I love each and every one of my clients and have so much joy capturing your beautiful families, but my and my family’s personal needs and commitments are very substantial this year and finding time for everything has been difficult.

I will be finishing out any sessions that have already been booked and will be fulfilling any that have been purchased via gift certificates but I will no longer be scheduling any new photo sessions. For those of you already on my Santa Session list for this November, I still plan on doing them and will send out information in the Fall. (don’t worry 🙂 )

Thank you, sincerely, to everyone who has supported this passion of mine in so many ways. It means so much. Here’s to a well rested and healthy 2018. Lots of love to you all.

And because I’ve been remiss in posting for most of the year… here are some of my favorite images from 2017.

amaZing 3.21k Recap

I learned of Ruby’s Rainbow last year during their campaign in March to raise funds for scholarships to allow individuals with Down syndrome to pursue their dreams of post secondary education.   Seeing the recipients of Ruby’s Rainbow scholarships and hearing their stories has proven what we already believed, that Zeke can do anything that he wants in life and we will help him achieve it.   I love what Ruby’s Rainbow is doing for these individuals but I also love that so many perceptions of Down syndrome are being changed because of their stories being shared by this amazing organization.    With March approaching this year, I knew that I wanted to do something to celebrate World Down Syndrome Day and decided on organizing a race.   I’ve got many runners in my network of friends, family and co-workers and thought this may be a good way to bring people together and also to raise money for this organization that inspired me.  And so http://amaZingZ.org and the amaZing 3.21K race was born.

A year ago, many of you donated to Ruby’s Rainbow in Zeke’s honor.   This year, the goal for the race was simply going to be to raise as much as we did last year.   I emailed the founder of Ruby’s Rainbow and asked our total from last year.  When she sent me our total of $465 from last year she also mentioned that if we raised $3000, that a Full scholarship would be awarded in Zeke’s honor.   I replied letting her know that was so awesome, but that there was no way we’d make that much this year.  It would be a great goal for us to  work towards in future years.

I have amazing friends, family, co-workers and an extended network of very generous people.  From the moment we posted the website, Registrations, Virtual Registrations and donations started coming in.   People were sharing the post and friends of friends of friends were registering from all across the county and sharing with their running groups and friends.   We were humbled by the support.   Six days before the race we had raised $1000 and I was so excited that I emailed the founder again and let her know that we had doubled last year’s donations.  I never expected that amount to triple in the next 2 days.

But I was able to send her an email with an incredible total.   The emotion of an amazing few weeks culminating in a beautiful evening at the race finally hit me and I was in tears when I typed out the total of $3328 that Ruby’s Rainbow would be receiving thanks to all of you!

And Her reply:  “Holy shitballs!!!!   That is AMAZING!!!! OMG!!!!  You ROCK!!!  WOWZA!” 

I can’t thank everyone enough.  Truly AMAZING.

AND… if that wasn’t amazing enough, we had an additional amount to donate.   In the last couple of months I have been hearing about a family close by that is in the process of adopting a baby with Down syndrome from the Ukraine.   The fees, travel expense and other expenses can be great for these international adoptions, but are SO needed.   Reece’s Rainbow advocates and finds families for orphans with Down syndrome and other special needs. So we have also donated a total of $824 to Reece’s Rainbow specifically for this family to bring this beautiful baby boy home:

When I let the mother know she replied with, “Wow! I am in tears. I can’t thank you enough! We are so close to traveling and you are an answer to our prayers.”   Thank you to you all for answering some much needed prayers.

*Totals for Ruby’s Rainbow include proceeds from race registrations, virtual registrations, donations, a personal donation from Ken and I, and a match on the personal donation from Salesforce.
*Totals for Reece’s Rainbown include proceeds from the raffle, a personal donation from Ken and I, and a match on the personal donation from Salesforce.

I want to thank EVERYONE who donated, who shared my posts and who read my multiple posts day after day without getting annoyed.   And I have a few special thank yous:

I’m not typically one to do a lot of fund-raising nor do I really love it.  I shy away from asking people for money and therefore had an internal struggle of whether I could really pull this off.    But, I bounced the idea off of a couple of very supportive friends, Kase and Mary Johnstun. They love Zeke and I knew they would support the idea and give us the encouragement we needed.  What I didn’t expect was for them to take my little idea and run with it.   When my fire started to fizzle, Kase would ask about it and say things like, “even if you get 10 people this first year, that’s great!”  And when I almost let the idea die for fear it would be too much work Mary called saying… “can I organize a raffle for the race?”  “Can I bring snacks for the end of the race?”    And yet again, just when I wasn’t sure of the logistics and when it all seemed too complicated, I got text from Kase, “just talked to them, we can totally use the location.”   And so we really owe the race to them.   Thank you for the encouragement, support and for truly making this happen.   Love you guys.

I also likely would have not done this without the support of my company, Salesforce, who has incredible values, one being Giving Back.  They give us paid time to volunteer, encourage us to give back and support organizations meaningful to each of us.   With the support of the company and my friends and co-workers, I knew we could do this race.  And we even did a lunchtime version at work that day with this great group:

To our wonderful friends, the Martin family.   The tiny spark of an idea for amaZingZ.org began stirring in my mind after Zeke’s first birthday.   Their daughter AzZi (who I think deserves the same shirt!), picked out the perfect gift for him, a pair of pajamas that said, “I put the Z in amaZing.”   Everyone that saw us open them that day had the same reaction…. “totally PERFECT!”

A huge thank you to my friend, Chris Vesper, Admiral Beverage Corporation and the Pepsi Sampling Team who provided all of the finish line beverages.   Thank you to St. Joseph High School for a perfect location, that took us on a beautiful run!

And thank you to all of you who came out on a beautiful night to run, walk, meet Zeke and support us:

Men’s winners (from left to right, 3rd – Tage, 2nd Jeff, 1st Dax):

Boy’s winners (from left to right 3rd – Gabe, 1st – Tatum, 2nd – Ricky)

Girl’s winners (from left to right 1st – Azzi, 2nd – Teylor, 3rd – Ellie)

And for some reason, I missed getting a picture of the women’s winners.   But each received a special “medal” for their placement.



If you’d like to see all of the pictures or download any of them you can do so at https://heatherbirdphotography.pixieset.com/amazing321k/

Thank you again.    We love you all!

Ken, Heather, Zeke and family.