Tuesday, September 12, 2017

Even in trust, there's triggers

We are blessed that in this massive city of Houston, there's one other family parenting a child with Cohen Syndrome. A family that has a daughter just three months older than Clara.


Or maybe a God thing. :)

After many recent attempts and cancelations due to sick kiddos and the like, we finally were able to collide our calendars for a dinner get-together.

It was so good for my mama soul.

Because as much as my family and friends support and cheer on and stand beside, unless one is living the day-to-day life of a child with special needs, the ability to fully understand and relate is just hard. And honestly? It's comforting to know that someone else understands every. single. bit and is able to say "Oh goodness, my girl does that too," or "Us too!" or "What do you do about x, y, or z?"

This get-together came at the perfect time for me. The perfect time meaning the start of the school year. The school year when my sweet girl should be entering Kindergarten, but instead she remains in the same class that she entered 2.5 years ago at a school for children with special needs.

I'm fully trusting and confident in our school choices for Clara. It is where she needs to be, no doubt. And I'm fully trusting of God's overall plan for her life. One thousand percent.

Even in trust, there's triggers. 

After a long, hard meeting yesterday with Clara's BCBA, regarding a new plan for potty training (please just pray) and potentially transitioning her to a communication device/iPad app from her PECS book, I stupidly opened Facebook.

You would think I would have known better.

Picture after picture of children on their first day of school, kids starting Kindergarten, etc. etc. etc.

And I broke down in tears because here I am discussing programming for how to teach my five year old to void on the toilet, how to help her best communicate, and agreeing with her lead therapist that no, she is not ready for a less restrictive environment, all the while moms of typical kids are distressed because another school year is starting.

In 100% vulnerability I wanted to scream, "Do you not get what a blessing this is, your kids going off to school? Your kids are starting at a typical school with typical teachers in a class full of typical peers sitting in a typical lunchroom and playing typically at recess and will continue this year, all year, to learn all typical, age-appropriate, educational targets, and you are crying?"

All the while I'm crying because who knows if my child will get that experience.

All the while I'm crying because we are working on skills we've been working on for years. Skills like "Pat the table," pointing to objects, "Wipe your face," "Show me your eye," "Walk with me," "Look at me, Clara," and other targets such as completing a 3-4 piece puzzle, responding to her name, drawing a straight line, stringing a bead, using a fork and spoon, and the like.

I'm crying because while I fully trust, life around me continues and will continue to be a reminder of how different life feels for our family at times.

Through the tears the Holy Spirit convicted, as He always does, ever so gently.

Just because you're dealing with a certain level of hard doesn't mean the people around you, other moms, aren't entitled to their own level of hard. Hard is hard and looks different for all of us. Feelings are feelings and regardless of circumstance, feelings are real for all of us. 



All the while I sit crying about my child's lack of milestones and delayed entrance into the world of typical school, another woman is crying because she so desperately wants a child to call her own and is waiting, childless, and looking at my life probably wanting to scream, "Do you not get what a blessing this is, the fact that you have a child at all?"


There will always be our hard and another's harder.

I asked for a little bit a lot of forgiveness, wiped my eyes, shut down Facebook and instead pulled up the pictures from our dinner date. The tears soon replaced with a smile.

These two are so stinking cute. Seriously.
Their mannerisms and facial expressions and habits are identical. Cutest kids I ever did see. 

When I look at these pictures I see love, joy, peace, and an abundance of happiness. Four qualities that most all of children with Cohen Syndrome possess. Four qualities that at their core, are more important than any typical educational milestone.

One of the symptoms of Cohen Syndrome is, and I quote from our paperwork, "a cheerful disposition." Pretty amazing, right?

What a gift.

I've heard that when parenting a child with special needs one must be on their guard against these types of triggers (as in, don't open Facebook on what would have been a milestone day), and that it's completely likely these triggers will come and go throughout our lifetime because there will always be our reality vs. another's reality.

Even in trust, there's triggers. 

But trust is what keeps me moving forward, head held high, regardless of circumstance.

Trust is what helps me wipe our eyes, smile with contentment and feel utter gratitude for the gifts God allows my friends to experience.

For the gifts He allows me to experience.

Brandon texted me this picture the other day.
I replied, "Cookies in bed?"
To which he replied, "She asked for them."
Haha, love them!

Sleeping angel 


  1. Hey!
    Clara is such a lovely girl and Camille too !!
    My daughter got the same diagnose last month and there is no other family here. Thats so good that i found your blog to read something about CS and see another family with same diagnose.
    Best wishes!!

    1. Thanks for reaching out! So glad you found the blog. It is so nice to not feel alone! Have you found the Facebook group for parents?

  2. I'm sorry yesterday was hard. Social media is great for connecting us but also, unfortunately, great for comparison, which, as we all know, is the thief of joy! I'm thankful that y'all have a family close by that can yes, "yes, me too!" to make you feel less alone in all of this!

  3. Thank you for this post!! I appreciated your thoughts, and can SO SO SO relate to the triggers that inevitably come, and I've come to realize will probably always be a part of my life. And I loved your comment about other ladies wishing they could have kids - it is all about perspective, isn't it?! And I could even start to compare my special needs daughter with yours, but then realize that we are all have our own journey, trying to find joy, to focus on things to rejoice in, and rejoice TOGETHER in! With good friends and with God who loves us! I love how you rejoice in a sweet, peaceful, cheerful Clara with the most amazing hair ever! Seriously, that hair is amazing!

    1. Yes! Such a good point. Even within the special needs world it is so easy to compare milestones and how children are functioning etc.

      And you're right - we are all in this together, to rejoice together in the uniqueness of it all.


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