VisualADVOCACY

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CopingQUOTE

“They say nobody is perfect. Then they tell you practice makes perfect. I wish they’d make up their minds.” ~Winston Churchill   

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DuchenneALERTS

♥ duchenne muscular dystrophy - harrison’s story – YouTube
This is the story of Harrison Smith, our son. We found out he had DuchenneMuscular …
www.youtube.com/watch?v=L2typ_mVxdw

♥A van plan
Orange County Review
Brothers “G” (George) and Ben Plumb were born with Duchenne muscular dystrophy, a genetic defect that occurs in approximately one in 3,600 male births. Symptoms include muscle weakness and difficulty walking. By age 12, most patients are in …

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aMistyMOMENT

(Sometimes a Blog, sometimes a Vlog)

Is fear and trying to be perfect leading to frustration and exhaustion?

The Duchenne Parents to do list is long and full of fear. With school, doctors and therapy appointments. The constant evaluating of the disease progressing so you don’t miss something life changing important. The pressure is in surmountable to give your child the best life possible.

Then we have advocating. Where the heck is that suppose to fit in?

The worry, the sleepless nights often times leads to overwhelming anxiety. And if you are like me I am contunially reading all the Google Alerts, Blogs and websites to stay in the know. Not only do I live Duchenne personally with my son. I have dedicated the last few years to Duchenne awareness and advocacy. All the while striving to not miss out on life or get caught up in other peoples drama.

I have to admit I’ve been feeling exshausted and frustrated that I am feeling exsausted. I am suppose to be setting a good example of Thriving not just surviving! I am suppose to be the perfect wife, the perfect mother, the perfect advocate, the perfect role model, the perfect community member, the perfect author, the perfect blog writer…the perfect everything.

HOLD UP!

I recently even had a friend tell me to quit being so hard on myself!

She’s right!

If this sounds like you too. I hope you realize its not about being perfect. That striving to be perfect in every way only leads to burn out and more anxiety. Sure its great to better yourself and not make the same mistakes twice but to berate yourself in the midst of the most challenging beautiful time of your life is out and out silly. I’ll even say totally WRONG!

It goes without saying that you love your children but to be so absorbed into doing everything perfect and to cause yourself more anxiety has you not showing up in other areas of your life on purpose and engaged. This is no way to live. YOU are human. It’s OKAY to lighten up when needed. 

As always, leave a comment below and I’ll comment back, maybe we can help each other? I’d like to hear your thoughts and comments about trying to be perfect. How does perfection cause you more anxiety? And what if you spent that same energy trying to be perfect on doing something else more productive, more meaningful?

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EmailMISTY

Is there anything that is troubling you about coping with Duchenne related issues? Or maybe you have a suggestion you’d like to share with others. Pop Misty an email at Misty@MistyVanderWeel.com. You can be sure Misty will answer any question to the best of her abilities or send you in the right direction.

Misty@MistyVanderWeele.com

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DuchenneMOVEMENT

What is the Duchenne movement? I pulled this definition off of dictionary.com they had something like 17 different definitions but my favorite one is this. “A diffusely organized or heterogeneous group of people or organizations tending toward or favoring a generalized common goal.”

Our goal being a cure for Duchenne; while living and giving the best possible life to our Duchenne children and families.

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