Friday, June 21, 2019

Cohen Syndrome Awareness Day 2019


Today is Cohen Syndrome Awareness Day!

You have never seen me post about CSAD on the blog? Well, I don't think I have. The date changes from year to year so. . . I typically forget. 


Did you know that less than 1,000 people in the the world are diagnosed with Cohen Syndrome?

Clara is the COOLEST kid. #duh There are challenges we face both now and in our future (I have had my share of meltdowns during #operationpoopgoesinthepotty), but we feel so lucky that God gave us Clara to parent, syndrome and all. If you click the link below to read more about Cohen Syndrome, you will read that a happy disposition is one of the clinical characteristics. How cool that God created her purposefully with a steady joy, one thing that He so deeply desires for all of us? We have so much to learn from this beautiful child and from ALL of the beautiful people with Cohen syndrome. #CohenSyndromeDay2019

Tuesday, June 18, 2019

Joy Makes The World Go Round

Today I have the honor and privilege of sharing a guest post by Becky Beresford. I met Becky via an online bloggers platform and when chatting online about supporting other women's efforts, Becky and I decided to each share on each other's site this summer. Once I learned Becky also had a child with special needs, I knew it was a good fit. I asked Becky if she would share a bit about how she finds joy in the mist of parenting a child with different abilities. Be blessed by her words and then check out her website and social media platforms!

. . .


I’ve had a weird relationship with the word JOY, mainly because I haven’t understood its true meaning. 

When I became a mama, I felt guilty because I couldn’t see the beauty in every moment. I was tired and worn down, struggling with some hefty postpartum depression. The doors to my motherhood expectations were blown completely off their hinges the second we entered the hospital. After 28 hours of labor, my entrance into parenting involved an emergency c-section and a horrible recovery. I had to be reopened because of the infection in my incision, which was proceeded by allergic reactions to prescribed antibiotics and more. It was the absolute opposite of what I had planned. And so, Dear Reader, let me be real. Even though I was grateful for our precious little boy, if someone would have told me to “find joy” in the midst of so much pain, I probably would have shown them the door. I was that mad at God. I was that mad at myself.

It’s been 8 years since we’ve welcomed our David into this world. During this time we’ve had two more babies and miscarried a sweet third. With all the challenges and changes, my mind has had a decent amount of time to process joy within motherhood. But a major perspective shift happened when David was 2 years old. We were at his regular pediatric appointment when she told us David wasn’t developing as she liked. I remember catching my breath and then reminding myself to breathe. As hot tears started to form, I tried to fight off the panic. What was wrong? What did she mean? Would my boy be okay? The doctor clearly saw my impending freak out, so she assured me that he was healthy, but still she wanted him to get evaluated for sensory issues, including autism. The full weight of her sentence was felt. As I watched my beautiful boy tip-toe around the office, I knew this was going to be another unexpected entrance into motherhood. Except this time we were stepping into a new community. We were becoming a special needs family.

If you are a mama to a sweetheart with special needs, I just want to say I get it. We love our babies wholly and unconditionally. They are hand-picked gifts sent from Jesus, meant to change our lives and impact the world. But no one tells us how turbulent it is going to be. Nobody gives us a guide to the hard conversations or waves of emotions. I still struggle knowing how to parent my autistic son, whether I’m doing things right or screwing matters up completely. Every day he receives mixed messages, with his family on one side and society on the other. We tell him he is perfectly and wonderfully made. Society tells him he needs to change and adjust in order to “succeed” on their terms. He is told he needs to go to vast amounts of therapies, summer schools, diets, and appointments. Meanwhile, he sees his brothers and his friends living a life unlike his own. He knows he is different. He knows he struggles with “sensitive ears” and focus and anxiety and regulating his emotions. He sees the look on people’s faces when he has meltdowns at the department store and notices when the neighborhood kids stare. My boy understands far too well, and I find myself waging war between two realities… 

1.) He is loved just as he is by his family and God.
2.) The world will always tell him he is not enough… That he is “abnormal.” That he is flawed. 

And while each of us is imperfect, we are all perfectly made. God didn’t make a mistake when He made my son, just like He didn’t mess up when He made you or me. Everyone is unique on purpose. For our family, neurodiversity is celebrated because God is abundant in creativity and has crafted each of us specifically to reflect His own glorious image. Our bodies are different. Our minds our different. Our stories are different. Each individual is meant to highlight the character and heart of our great God in specific ways, and that’s a REALLY good thing!



These truths have become the steady undercurrent of JOY for our family. We have been blessed with the ability to see people in a holy light. By giving us our little boy, God has opened our eyes even more to the beauty of diversity… every tongue, every nation, every tribe. Every kind of people. In eternity we will experience the glorious coming together of all God’s children but raising our autistic son has helped us experience the joy found in this fusion NOW. We get to witness the power of the gospel for every soul because each one is precious to God. We get to tell our son, as well as others, that when the world says we are not enough, we can stand tall and declare our worth in Jesus because our identities rest firmly in Him. 

David will likely have a harder battle when it comes to accepting his value and security in God because society often desires to conform people to their standard of “normal.” But we want our son’s mind to be conformed to the thoughts and ways of his Savior. We want David, as well as our other sons, to know the joy of the LORD and all it entails. We want them to rely on God’s character and trust in His promises. He sits on the throne. He rules supreme. They can trust in His eternal reign and know that no matter what, they exist as beloved sons, joint heirs and triumphant warriors. We were ALL born to change the world, each person placing their permanent mark on the fabric of history. Being a special needs parent is hard, yes. But it is also a high honor. We are invited to partake in the sacred process of opening the world’s heart to the diversity of heaven. We have the privilege of ushering in the fullness of our extraordinary God. This is our unexpected journey. This is our treasured joy. 

May we bring His loving kingdom down. 
On earth as it is in heaven.

. . . 


Becky lives in Huntley, IL and is happily outnumbered by her husband and their three wild boys. She thanks Jesus for coffee daily. She is a writer, dreamer, certified life coach and speaker with a Master’s Certificate in Discipleship from Moody Theological Seminary. Becky loves encouraging God’s Daughters to embrace their precious worth and live life fully loved. When she isn’t at the keyboard, you can find her dreaming of warm beaches and hanging with her people. She would love to connect with you online at www.BeckyBeresford.com, as well as Facebook @www.facebook.com/beckyberesfordauthor and Instagram @www.instagram.com/becky.beresford

Tuesday, June 11, 2019

Camille's magazine debut

Our little comedian was quoted in the July 2019 issue of Parents Magazine. Her mind was blown when she saw both of our names in the Giggles section.



She is constantly making us laugh! Another example? I shared it on Instagram, but I will share it here for kicks, because why not post more embarrassing moments on the internet?

Last Thursday, while waiting in the lobby of Clara’s CROWDED, yet quiet, therapy clinic, she loudly exclaims, “Mamma! What is wrong with your legs? There’s like all these little bump, hole things right here. What is happening to your legs?! Will mine do that when I’m a grownup?!”

Ahem.

#awesome


We love you so much, Camille! Keep us laughing forever!
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