Walking Through The Darkness

Walking Through The Darkness

You see, we can not be strong and brave without feelings of fear…..one does not exist without the other.  The very definition of bravery is the “quality or state of having or showing mental or moral strength to face danger, fear, or difficulty,”  and strength only comes when we push ourselves beyond what is comfortable.

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Fighting for Change

Fighting for Change

Writing this post is really difficult, because it plays to one of my worst fears as a parent of a child with special needs.  The timing is ironic, as I literally just sat with a friend in a coffee shop over the weekend and shared this fear….that my daughter, Taylor, will be treated poorly or subjected to verbal or physical abuse, and that I will not know about it. Every parent fears this, but it is most concerning to me because my daughter is nonverbal. She would have no way of telling me what happened.

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5 Lessons Learned Since The Diagnosis

5 Lessons Learned Since The Diagnosis

One year…..One year since we received the call that would firmly change the projected path of our lives.  Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays.  PURA Syndrome - the first time I would hear the name of this rare genetic condition.  Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.

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Give Thanks

Give Thanks

Thanksgiving is upon us!! We love this time of year.  Our family views it as a time to come together and reflect on the blessings of the last year.  2018 has not been the easiest year for our family, considering we received a diagnosis for our daughter, Taylor, which explained her significant developmental delays, but despite that, we are trying to approach life with thankfulness and gratitude.

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