Our Story

First it was just the two of us - Aaron and Karen. We met at Taylor University and married in the summer of 2002.

A little over five and half years later we discovered we were expecting our first baby. What joy! We spent the next nine months preparing for the new addition to our family. Each doctor's appointment went smoothly with reports that the pregnancy was going well and that we could expect a healthy baby boy on September 29.

Taken just a couple days before Grant was born

On September 12 I was admitted to the hospital. A two hour non-stress test was conducted and things went downhill quickly from there. After seven very stressful hours, Grant was born via an emergency cesarean.

While I was laboring Grant's heart rate fell dangerously low and the hospital staff couldn't get it back up. The cord had been wrapped tightly around his neck and the doctor was unsure how long it had been that way. Had Grant been without oxygen long? No one knew.

Over the next couple months, Grant showed signs of developmental delays. He pushed up on his arms late, sat up late, crawled late, walked late, and never babbled or talked. I was also convinced something was wrong with his hearing. He did not consistently respond to his name.

Grant was evaluated at 12 months by the early intervention program in North Carolina. I was told that he had developmental delays due to hypotonia (low muscle tone). He began physical therapy and I began to search for clues to the cause of the hypotonia.

Six months later Grant's pediatrician suggested autism. I was taken aback. I knew something was wrong but Grant had great eye contact and was very engaging - socialization was his best attribute. I agreed that some of the symptoms over-lapped but did Grant really have autism? Grant was evaluated twice and both times they gave the exact same report: "I just don't sense autism..." It was then that Grant was diagnosed with Sensory Processing Disorder.

It was also at this point that we welcomed our second son, Wesley, into the family. While this wasn't planned, we were thrilled that our boys would be close in age and grow up together. We became a family of four in March 2010.

I continued my hunt to find the source of Grant's delays. While I still thought the source of Grant's issues was very possibly from his birth experience, I kept sifting through the causes of hypotonia. One of the causes was a genetic disorder called Fragile X Syndrome. Each time my gaze would land on information about the syndrome I would push the nagging suspicions out of my mind. Finally I brought my fears up with a neurologist. She agreed and ordered the test to be done. Four weeks later I got the call that Grant's blood work came back "abnormal." It had been confirmed... Grant has Fragile X Syndrome.

Photo courtesy of Almond Leaf Studios

Because the genetic nature of the syndrome (and now knowing I am a carrier), I began to fear for my second son. While he was hitting all the developmental milestones, we chose to test him as soon as possible. A month later the results from Wesley's Fragile X test came back negative. He isn't even a carrier!
Wesley - 8 months old

Our days now are filled with trying to give Grant all the therapy we can - early intervention is vital. God has chosen a different life for our family than we had planned and wished for but we recognize His sovereignty. His plan, while not completely known to us, has already been full of struggles but also full of beauty.

Photo courtesy of Almond Leaf Studios

As [Jesus] passed by, He saw a man blind from birth. And His disciples asked Him, 'Rabbi, who sinned, this man or his parents, that he would be born blind?' Jesus answered, 'It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.' John 9:1-3

Soli Deo Gloria.

Click here to learn more about Fragile X Syndrome.

Click here to learn more about Sensory Processing Disorder.

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