Thursday, November 9, 2017

Annual Cohen Syndrome Association Fundraiser 2017

On Saturday, November 18th at 10:00am, Noonday Collection is partnering with the Cohen Syndrome Association (CSA) to honor our sweet daughter, Clara, and Katherine Christoff. We will have a fabulous jewelry trunk show, silent auction, and array of brunch goodies and hot beverages. This is the perfect opportunity to get ahead of your Christmas, teacher appreciation, or birthday shopping and do some purposeful purchasing. Your purchases will not only be supporting women and children around the world through Noonday Collection, but our very own Clara and Katherine, who were both diagnosed with Cohen syndrome. 

If you would like to attend in person, and have not yet recieved an invitation with location details, please let me know and I will get you an invitation!
If you cannot attend, please consider supporting this fundraiser by shopping our online trunkshow link here. 

Our sweet Clara's story...
In November of 2013, after a solid year of procedures and testing, we finally received Clara's diagnosis of Cohen syndrome. Clara was just 18 months old. Mutations in the VPS13B gene (also called the COH1 gene) cause Cohen syndrome.
While the road is not easy, we considered it a blessing to have a firm diagnosis, one that explains and gives insight to her beautiful, unique personality. 
Each year in November we hold a fundraiser to honor Clara's diagnosis month, raise money for CSA, and celebrate the special needs community. Due to the rarity of Cohen syndrome (less than 1,000 cases worldwide), the CSA does not quality for grants or like funding opportunities, so parent fundraisers are so important! 
We cherish this fundraiser event and our hope in continuing the tradition is to convey the message to families that a person with special needs is just that, a person first. A person worth celebrating! Is raising a child with special needs extra challenging? Yes. Absolutely yes. But just because something is hard doesn't make it bad or scary or sad even. Even in the challenges we are confident Clara is exactly who she was created to be, not broken or less than in any way. She is a joy, a light, and God's good gift to us.

How the fundraiser will work...
We pray that you can join us and help fundraise by bidding on silent auction Noonday items that will be on display starting at 10:00am. We will announce highest bidders at noon. During the silent auction, trunkshow items will be available for sale as normal. Items can also be purchased online as mentioned above. All proceeds from silent auction and commissions from trunkshow and online purchases will go to the CSA (not to the Blackburn or Christoff families). We are hoping to raise as much as possible to support the mission to create Cohen syndrome awareness and provide funds for reserach and development. 

2014 Spirit Night at Chick-fil-a
2016 Spirit Night at Chick-fil-a 
2016 Spirit Night at Chick-fil-a
Thank you for your love and ongoing support! 

Want more information? See links below...
What is the CSA?

Friday, November 3, 2017

Thanking God, Even In The Mess

"Mommy, when I get bigger, I will help you take Clara to the potty. I will always help her." - Camille

The last few days have been, well, stressful. On Monday we officially took away Clara's pull-ups. She is in underwear full-time, unless sleeping.

You might remember we attempted potty training a-year-and-a-half ago and while she was making progress and showing signs of improvement, little by little, we slipped back into old habits.

We never fully took away her pull-up in-between potty sits and because we had the cushion and convienince of the diaper, we got pretty lenient on keeping her on any type of regimented sit schedule.



I will say though, it's quite hard to fully take the plunge into underwear when your child doesn't mind being wet or dirty and doesn't initiate and then of course, there's the nonverbal piece which throws in an additional challenge.

So here we are, five days into operation potty training round two. We are taking a slightly different approach than last time.

Her protocol (while awake), as instructed by her BCBA, for the next few weeks:
Every two minutes prompt to drink.
Every five minutes conduct a dry check. If dry give verbal praise.
Every thirty minutes - 10 minutes on the potty, 20 minutes off
*Play iPad is reserved for successful voids on the toilet only. If she has a success she gets the iPad for 5 minutes, then it goes away. She is not allowed access to the iPad at all unless a success. This will help pair her most reinforcing item with voiding on the potty. I pee on the potty, I get iPad.
*If she has an accident, we say "No wet pants," and take her immediately/swiftly to the toilet to sit and help clean herself up.

I have broken-down in tears multiple times this week. My stomach is in constant knots. This process is stressful and emotional and awakening some new feelings I haven't let myself feel in a long time. Feelings that I will likely have to revisit time and time again as Clara grows and her target milestones change.

I struggle to balance letting myself feel what I feel, but also not letting the stress rub off on the girls, and especially Clara as we take trip after trip to the restroom.

Even in the midst of the mess (literally!) God has graced me with some extraordinary sweet moments.

So I am choosing to say "Thank you, God," even in the mess of it all. (Does not always come naturally. I have to focus and actively choose way more than I'd care to admit.)

A few of those sweet moments . . .

When Camille, totally unprompted, grabbed Clara's hand to guide her into school one day.

When she then gently touched Clara's back to help her up into the doorway, just like mommy and daddy do daily.

When Camille tenderly told me, "Mommy, when I get bigger, I will help you take Clara to the potty. I will always help her." Melt me.

When Clara, after listening to Camille repeatedly sing a new song she learned in preschool, began to giggle after the last line, every. single. time.

When Clara successfully used her speech iPad (Proloquo2go app) to request toys from around the house. She is starting to differentiate between folders for home and school and it's exciting to watch!

When Clara successfully voided on the potty at school and at home several times yesterday!

Love these two and thankful for our days together, even if some of those days are spent cleaning up endless amounts of poop and pee. :) I'd be just fine if there was less of that though.

Wednesday, October 18, 2017

Annual CT Vacation 2017

Per our annual tradition, we just returned from a week in the glorious land that is Connecticut!
Most of you that have been following for a while know how much we look forward to this trip every year.

Blast from the past . . .
2014 part one
2014 part two
2015 - Aka the year my youngest child traumatized every passenger on the plane and I may or may not have texted a friend who once we landed asked, "How did Camille do?" with "My child acted demon possessed." 
2016 part one
2016 part two

The weather wasn't as cool and the leaves not as bold as usual, but we still had a fabulous trip and are grateful for our time away as a family, with family. We got out and about each day, but also soaked in rest and relaxation. My perfect vacation combination.

CT bound . . .

While my aunt was at work one day we took the girls to a little shopping center for play and cupcakes and pizza (yes, in that order, because vacation). . .

Camille warmed up to the pets a bit quicker this year. It only took her two and a half days to stop screaming when the dog walked by, opposed to the usual four. Progress!

Flaming Farm . . .

It's important to note that Clara decided she once again likes pony rides. This girl cannot make up her mind. Love her! We almost didn't try, but I'm so glad we did!

Several trips to Tulmeadow Farms for homemade ice cream . . .

#reallife . . .

Park time . . .

We visited the cutest little toy store, Necker's Toyland. Think the opposite of Toys R Us and more "mom and pop."

And per tradition, we ate at LaSalle's Market & Deli and strolled by the river for pictures . . .

And some miscellaneous fun. . .

Our (early) flight home. . . they were wiped!

CT, we love you! See you next October . . .
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