I am a wife of the hardest working man I know, and a mother of three great boys. One “bonus” teenager, rambunctious 4 year old, and a special needs 18 month old. Life can definitely be crazy. We live in a house where toys and equipment take over every single space. There’s an adaptive chair on the floor next to a large bin of pinto beans that just so happen to also be camouflaged everywhere in the carpeting. Oh, and we still have a Christmas garland over the front door in the middle of July. Our house is lived in.
Recently, I quit my job to stay home full time and care for our youngest child. When he wasn’t progressing developmentally and had a very difficult time holding his head up we just knew that something was not right. I spent many days and nights on my knees praying for him. I recall begging God for his brain to be healthy, and was terrified at the thought that it wasn’t. I was scared to get an MRI because somewhere in my being I just knew that my worst fear was about to come true. I’ll never forget the day his neurologist called me one hour after his MRI (you know it can’t be good news when they call you that quickly.) The MRI showed that his cerebellum appeared to be shrinking and within a few months he was diagnosed with a rare genetic disorder; Congenital Disorder of Glycosylation. It took us by surprise to say the least, and changed our lives forever.
In the short time since his diagnosis I have tried to gain as much knowledge as possible about his disorder. He is followed by many specialists, many of whom have never seen his disorder before in their careers. Many parents of children with CDG will tell you that as a parent it is our job to be the expert. I am doing my best in becoming just that.
Writing has been a great outlet for me to share what I’m feeling and what our family is going through. I am not a professional writer by any means, but I enjoy putting my thoughts on paper. Everyone has struggles and triumphs, and these are ours.
I look forward to sharing our joys and struggles with you, as well as a few laughs along the way.