Rare Significance. Day 23. June Awareness month.

When I decided to take on the task of posting each day on social media I had no idea just how much I actually needed it. Each day is a blessing. And to rephrase the quote “If the only prayer you said in your whole life was, “thank you,” that would suffice.”

Thank you.

Thank you for answering my prayers that one day we would have answer.

If you have a child that has endured 15 surgeries in Her young life you begin to wonder. You become significantly curious. You read medical journals looking for something significant to connect the dots. No lie. Samantha was diagnosed with a chiari malformation in May of 2006. I think I read a journal a day in regards to significant findings of children diagnosed with Arnold Chiari Malformation. I defined every single word that was in the MRI report. I can remember the day when the radiologist asked me to comeback in the x-ray lab to help her review Sam’s findings. Me. Abnormalities of the Cranial Cervical junction seemed to flow out of my mouth (in awe that I could even pronounce such an issue) noneless my own daughter was in deep dire straights and we had to find the right treatment. Then the questioning from my brain ….WHY did this happen? Did I do something?? I thank God every single day He gifted Samantha with a Heart and Soul to handle such a journey.

So.

June 23, 2020.

Day 23 | Significance. Life is totally about learning to dance in the rain. Today is Team Spirit Day! #WearYourBlue We celebrate a diagnosis after 23 years. Without a treatment plan there are no goals. If you wake up feeling awful day after day and you have no idea why life is pretty tough. That was Sam Senior Year at Samford and no one knew it. She had a gift of hiding it so well not even those closest to her knew. After graduation we set out on the road back to Iowa to find answers. With the help of Dr. Trapane we found answers. We share so that others understand, not about what we went through but because in our experience we have found friendships and encouragers that have cheered us on. Having something rare and extraordinary is powerful in itself. It’s significantly inspiring to document to help others. Finding out Sam’s underlying causes LDS was one thing but sharing a diagnosis of HCU has been significant in understanding a healthier way of living. For more information ℹ about LDS or HCU please contact your primary care physician. We are not by any means a Dr. or do we claim to be. We are thankful for the LDS  and HCU community and their work connecting us to the our physicians and experts in the field.

Remember I am really not a Blogger or do I claim to be good at this – A reflection of time … I continue to learn and transition.

Building awareness and continuing to document for other parents that have been gifted this incredible journey.

https://www.marfan.org/loeys-dietz

https://www.marfan.org/loeys-dietz

https://www.edutopia.org/blog/reflecting-for-change-journaling-blogging-rafranz-davis

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