Grace Hughes | CaringBridge
7th grade 
Please do not think the scoliosis has her this way! She was trying to get away and close to crying. I wish we could have had another chance to get her to sit up more, but she is not this bad with her posture. :o)  13 years old!

Grace Hughes

First post: 3/13/2017 Latest post: 19 hours ago
Grace is our energizer bunny! She is 13 and has Angelman Syndrome, a genetic disorder, Lennox-Gastaut Syndrome, a form of epilepsy,  and we are happy to report she is 4 years seizure free!!!! :o)   On March 30th she will have spinal fusion surgery to correct her 49 degree curve; this will be from T-3 or L-5.

Here is how it all began...............................     All my life I’ve been drawn to special needs people. Always curious and wondering what their life is really like. Back when I was in school they were all kept very separate from us. We hardly ever saw them. They didn’t eat lunch when we did or have recess at the same time, etc.; and certainly NOT in our classrooms.

    But the reason why I’m telling you this is because I always had such empathy for people with special needs I felt I was a reincarnated special needs person. Up until I was about 27 years old….. By then I’d been married almost 9 years and we’d been trying to have a baby for years. Suddenly it dawned on me (I think it was my spirit guides telling me this) that *I* was going to have a baby with special needs! After all, I was going to be 30 soon and I knew the odds went up for having a child with Down syndrome after 30. So I was resolved this was WHY I felt this way for so many years!!! I wasn’t worried, I was ready. I was so sure this was the way my life was meant to be.

    Well, about 2 years later I finally got pregnant and waited for something at some Dr. visit to ‘show up’ and find out there was an issue. And I waited. Nothing. Everything went fine and we had a big, healthy boy. Cool! 2 years later we started trying again and we still had some troubles getting pregnant for another 2 years. Finally boy #2 was on the way and I was so sure this was it I started ‘hinting’ to my Mike about God choosing special people to care for ones with needs. He felt like I did that they are only trusted with ‘chosen ones’ but for him it was completely different. He felt also as if, “Bad things don’t happen to good people” and I don’t mean that in a bad way, just he did NOT think it would happen to us.

     Well, low & behold boy #2 came and was even bigger than boy #1 but just as healthy and strong. I was thankful but I was also a little upset and truthfully at a place where I was almost ‘mad’ he was ok. I felt SO SURE I had known what was coming and they were both FINE! WHAT DID THIS MEAN? Was I really so wrong in the message of what was going to happen?? 2 years later I was pregnant again. I wasn’t as bold in my thinking as I had been before, I didn’t know what was going to happen so I just went along and wondered. It was a girl. Yaaaay! I was VERY, VERY excited! Our family would be complete.

PART 2 in the Journal.......................................................P.S. PLEASE feel free to friend me on Facebook!! Stephanie Guidish Hughes

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