My son was born in May 2018 with right-ear microtia atresia (small ear without a canal opening), Congenital Heart Disease (two holes in his heart that were repaired with Open Heart Surgery in Nov 2018) and has since been diagnosed with Goldenhar syndrome, and scoliosis. We did not know of these things until his birth and were shocked, to say the least.

 

We poured ourselves into his care and ended up at 12 specialists within the first 12 weeks of his life. We spent countless hours in doctors' offices and struggled to find our path with a special needs newborn. 

 

When I first started sharing his story the goal was to simply have a place to share Nolan's story with our friends and family. To be honest, it was easier for me to share bad news on this forum than it was to call/text all of our friends and family. We were in a season of constant bad news and needed to be able to share our news just one time. This allowed everyone to get updated and allowed us to hide behind the posts.

It quickly became much more than a place to share bad news. It is also where we shared the good news, great news, happy news. It is where we have been able to share Nolan's story and be supported with more love and positivity than we ever thought possible. 

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We have been able to connect with people all over the world. We have found people that share Nolan's differences, something we used to only dream of. Everyone has a story, and it is always more than meets the eye. You just have to be willing to stop and listen. 

 

We have continued to share our story because of the community that it has created. We feel that awareness creates acceptance and in a world that wants to hide different, we want to encourage you to embrace it. 

 

One of my favorite quotes has been a building block for this blog. 

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“Do the best you can until you know better.

Then when you know better, do better.”

- Maya Angelou
 

Our story is far from over. We have a son facing life-long heart failure, he will wear a back brace for half of his day for the next 10-15 years, he is in PT, OT, and Speech therapy to catch up from being behind. But he has a smile each step of the way! 

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Our story here has become so much more than what we thought it would and we are so thankful that we can share it with all of you. Thank you for listening as we write our story, there is so much Moore to be written.