Saturday, December 26, 2015

Did you know

Did you know William could hold his head up when on his belly the day after he was born?

Did you know I took my pregnancy so seriously that I wouldn't even use the microwave?

Did you know my son was born 2 days past due date?  And his delivery was witnessed by 12 professionals as it was a teaching hospital?

Did you know that my son passed all the newborn screens that were mandated in the state of Alabama in the year 2014? He also scored a 9 out of 10 on the Apgar scale.

Did you know Krabbe Disease isn't part of the newborn screen in 45 states?

My son inherited a recessive gene mutation from his father and myself, the gene being handed down generation after generation unbeknownst to anyone, until William was 5 months old.

Now, my son will most likely never speak, walk, hardly move, never eat by mouth, you know the story.

Right when I think I'm okay, I remember those first few days after he was born.  He was so strong and big.  I tried so hard to have a healthy baby.  How, when he was laying on my chest on his belly, on his second day on this Earth, he held his head up and looked at his mama.  He undeservingly was handed a very unfortunate genome.  He is such a strong boy, and will continue to battle as long as he can.  We are so thankful to have such a powerful little man for a son.

Thank you for taking the time out of your busy days to stay updated on his journey.  It is our hope that we will prevent families from going through this continous cycle of grief we endure on a daily, if not hourly, basis.

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