Wednesday, December 20, 2017

Louder Than Words (The night my non-verbal daughter told me what's up)

Clara's bedtime routine goes down the exact same way, every single night. This is important as kids like Clara learn differently and it takes years of repetition and exactness for something to stick and become, well, routine.

Even down to the words we use. Simple, one or two word/step instructions.

Clara's bedtime routine looks like this . . . (She needs assistance with all of it, but we do make her "help" with each step.)

Brandon sits Clara on potty. ("Go potty." "Flush." "Wash.")

Brandon brushes her teeth. ("Open." "Top." "Bottom." Open." etc)

Clara turns off the water. ("Water off.")

Clara turns off the bathroom light. ("Light off.")

Turning off the bathroom light is Clara's que that it's time for bed. While Brandon has been handling the hygiene, I've been preparing her room for sleep (sound machine on, toys out, lights out, etc).

It only takes me a few seconds and typically I'm waiting in her room to rock her. She only prefers me to rock, and I'm not complaining one bit. If she gets to her room after turning off the light and I'm not there, she will whine and wait. Really, it's the sweetest time. To cradle your 5.5 year old "baby" in your arms while she drifts off to sleep is just, well, priceless. She doesn't fall asleep every night, but many nights she's so tired from the long school day that her eyes close within minutes.

One particular night I was rocking Clara and Camille asked if we could read her bedtime story in Clara's room instead of her room.

Brandon began to read to Camille, both lying on Clara's bed, while I rock Clara on the other side of the room.

Three or four pages in Clara shot up, walked straight over to the bed, and attempted to grab the book from Brandon's hands.

Initially, we attempted to redirect her. "No, Clara, it's time to rock. You can't just grab the book from someone's hands." etc. This went on for about a minute and then it hit me.

"Wait. She might be telling us something. Let's give her the book and see what she does."

So we did.

Brandon released the book. Clara held it tightly and walked back to me in the rocking chair. She very deliberately handed me the book and turned around to climb back in my lap.

"Clara! You want to read, too? You want to read tonight??"

She signed please.

I about lost my mind.

So Camille crawled in my lap, too, and the three of us girls enjoyed one of the sweetest moments I can remember.

I love Clara's smile in this one . . .

It's as if her smile is saying, "Thank you, mommy, for listening to me."

This incident was such a good reminder for me to listen well, to be slow to assume, and to read between the lines, because things are not always as they appear.

Clara was not trying to disrupt the bedtime reading.

She was trying to be included in the bedtime reading.

Sometimes, actions really are louder than words.

Tuesday, December 12, 2017

The Great Houston Snow Of 2017

As you have probably heard by now, it snowed last week in Houston.

What in the world?

It was an early Christmas miracle indeed.

In order to preserve this precious memory, a few pictures . . .

We attempted to wake Camille up Thursday around 11:00pm, but she was not. having. it. We drug her outside but her head was bobbing like a rag doll and she barely even opened her eyes.

To our surprise, the snow stuck overnight. Such a fun sight to wake up to!

We woke Camille up at 5:30am Friday and unlike the night before, she was totally on board to hop out of bed and needless to say, her mind was blown. She joined Brandon right away to finish the snowman in the backyard and start one in the front.*

If a snow day isn't a good enough excuse for donuts, I don't know what is!

Houston snow of 2017, you were a fabulous surprise! Definately a morning we won't forget!

*No, we didn't attempt to wake Clara Thursday night or Friday am,  for various reasons. We did show her the snow before we left for school Friday morning and she wasn't impressed. Ha! We think she was too cold and thus, annoyed and agitated. :)

Tuesday, November 28, 2017

Cohen Syndrome Association Fundraiser 2017 Results

A huge thanks to everyone that supported us by participating in our annual fundraiser for the Cohen Syndrome Association.

We raised a little over $1,200 just through the Noonday trunk show and silent auction. Best fundraiser to date! The total is still climbing ($1,816) as we have received several private donations. We are in awe and so grateful! 

Thank you, Janell Herman Mickelson, Noonday Ambassador and friend, for your hard work and effort to make this event such a success! You went above and beyond. If you are interested in shopping Noonday's products and are in need of an Ambassador, Janell is your girl. 

We are thanking God today for our family, friends, and our community near and far that continues to support our efforts in raising awareness for special needs, funds for this association, and prayers on behalf of our unique parenting journey. 

Girlfriend passed out by the end . . . :)

God bless you all! 

Thursday, November 23, 2017

Grateful for the Gift of Grace

I am honored to introduce you to my new friend, Kara, who is blessing us with a guest post today, on Thanksgiving holiday. Kara is a member of the Loved Baby tribe, an online support group for women who have experienced pregnancy loss of any form.

While walking the road of loss or trauma or any devastating heartache, the holidays can feel bittersweet. We're supposed to feel thankful, yet the hardships of life seem to override all the blessings. If that's you this Thanksgiving, you're not alone.

I love that Kara reminds us that even in the pain, we can be thankful for the grace of God, which in turn helps us extend grace to ourselves and grace to others during times of sorrow. The reminder that grace is a gift, in any and every season, and when we can recognize this, freedom is found. Such an important reminder when you're in the valley and can't quite see the mountaintop.

Enjoy her beautiful words . . .

Grateful for the Gift of Grace
By Kara Creel

If you don’t remember anything else I say, remember this: 
You did nothing to cause this; this is not your fault.

I didn’t realize it at the time, but my doctor’s words were the first of many extensions of grace I would receive over the coming days and weeks.

I remember crying in the shower, sobbing so deeply from chest that it was hard to breathe, “I’m so sorry, baby. I’m so sorry.” I would remember my doctor’s words, and take comfort in them. Then I would cry out to the Lord to carry me through those dark moments.

Three times I pleaded with the Lord to take it away from me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12: 8-9

Gratitude was easy in the days that followed losing our sweet baby. Support came pouring in from every corner of our little universe. Our loved ones brought meals and flowers, women who had walked this path before me reached out to me and spoke brave, life-giving words into my heart, and those who were not sure how to comfort me showed up willing to meet me in my mess, and just listen. In this season of thanksgiving, I have had no shortage of blessings to count.

I tried to push forward, and returned to work just five days after surgery. I was terrified of dropping the ball professionally. I made it through one full day, and at around 10:00 the following morning, I felt myself unraveling. I stared at my blurry computer screen as the tears came pouring from my eyes. I asked one of my co-workers and dear friends to come to my office; I thought I just needed someone to talk to. As I struggled to catch my breath through my sobs, she quietly closed the door behind me.Her eyes were filled with compassion as she said, “I’m cancelling your meetings and will talk to our supervisor. You have to go home, Kara. I am not leaving until you pack up your stuff. Go home and rest. Come back next week.” In that moment, she offered me the grace I was unwilling to give myself. My gratitude intensified, as I was acutely aware of the effort being made on my behalf by my work family. My colleagues offered me grace upon grace as they gave me time to work from home and catch up as I could.

Grace abounded in my personal relationships, as well. If the walls of our home could speak, they would tell you the most beautiful love story I have ever known. In the days following the loss of our baby, I all but lost sight of the woman I so desperately strived to be prior to that day. Every ball I tried to juggle, task I sought to accomplish, ambition I attempted to fulfill, obligation I was determined to meet, and dream I longed to achieve came crashing to the ground as I broke into one million pieces. I am a shell of the person I used to be, completely debilitated by my pain. Despite his own sorrow, my husband has yet to drop the ball in terms of caring for our family. He has wiped every tear, calmed my grief-ridden and anxious heart, and never once stopped believing in me. He has arranged every meal, washed every dish, and handled every detail around the house. He has taken impeccable care of our daughter, our dog, and me, and never once complained. He is the great love of my life, the kindest, bravest human I know, and I have never been more thankful that the Lord chose him to be my husband. His capacity for giving grace in light of the greatestheartache we have faced as a couple has left me with an appreciation for him that I will carry with me all the days of my life.

I have diligently sought Jesus in every place I know to look for Him throughout this journey. A precious spiritual mentor of mine, who has experienced tremendous heartache of her own, encouraged me to “lean into the Lord.” She urged me to journal and spend time in scripture, explaining that one day I would look back at my time of grief and recall some of my most intimate moments with JesusI have taken her advice, and continue to be keenly aware and in awe of His presence. Day after day, as I have struggled through my heartache, I have relished in some of the most powerful spiritual experiences of my life. I finally understand the expression “God’s living word” as it relates to the bible; the Holy Spirit has breathed His truth into my heart through the pages of Psalms, Ephesians, Romans, Corinthians and the gospels.

The word became flesh and made his dwelling among us. We have seen His glory, the glory of the one and only Son, who came from the Father, full of grace and truth.” John 1:14

I wish I could say that I was prepared to give grace to others in the magnitude that I was receiving it. However, there were times when I felt like I was being ignored, avoided, or that my pain was being minimized. Other times, a weightless remark would leave me feeling as though I had been stabbed in the heart. Now and then, a sobbing outburst would ensue and I would completely lose my composure, or my temper, or my ability tothink rationally, or all of the above. 

What was wrong with me? Was I not growing as a person as a result of this loss? Had I not gained an eternal perspective I did not possess prior to this experience? During one particularly overwhelming conversation, I felt a rage come over me and I lashed out in anger. I stood in my front yard yelling harsh words into my phone, shoulders heaving, voice cracking, and heart breaking. I was immediately remorseful and cried out to God for forgiveness. I was so ashamed of my reactions and behavior. As I listened for the Lord’s provision, I knew that He was teaching me something in my sin and weakness.

In the same way, count yourselves dead to sin, but alive to God in Christ Jesus. Therefore do not let sin reign in your mortal body so that you obey its evil desires. Do not offer any part of yourself to sin as an instrument of wickedness, but rather yourselves to God as those who have been brought from death to life; and offer every part of yourself to him as an instrument of righteousness. For sin shall no longer be your master, because you are not under the law, but under grace.”  Romans 6: 11 - 14

I remembered that grace was a gift that I also needed to give. I began to pray each morning for the ability to give grace when I felt hurt. That changed everything. I felt so much freedom when I extended Christ’s grace to another of His children. 

Over time, I realized that I am growing as person, after all. I have gained an eternal perspective that I did not possess before.For I now have a vibrant understanding of one of the Lord’s most precious gifts to us. During this season of thanksgiving, I am so marvelously grateful for our heavenly Father’s gift of grace, and to our precious, tiny baby, who grew our hearts exponentially in such a brief period on this earth.

Grace and peace be yours in abundance through the knowledge of God and of Jesus our Lord.”  2 Peter 1:2

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.
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