I met a woman today and after explaining what Christopher has and how congenital disorder of glycosylation (PMM2 CDG) affects his body she looked at me and said… “well you sure are in high spirits.” I was confused. I didn’t know exactly how to respond. I said something to the tune of I can’t change it and this is our life. But after thinking about it I wish I would have told her to look at him. Really look at him. Look past his head hanging a little lower than a typical 3 year old. Look past his medical stroller with his formula bag hanging on the handle. Look past…

We’ve all seen or heard the quote “the best things in life aren’t things.” The other day as Christopher sat in therapy for over 2 minutes using his arms for stability I nearly started crying. I thought about that quote as I smiled and hoped that we continue to experience a “non-thing” over and over again. After 2 years of constant therapy he was finally sitting for longer than a few seconds unassisted. To describe my pride and joy is nearly impossible. I called my husband and immediately texted him the video. I posted it to Facebook. Twice. I wanted to tell every person at the grocery store and the…

Sometimes the tears come when I’m not expecting them. Sometimes I am not even close to tears and then all of a sudden the flood gates open. Tonight as I was rocking Christopher to sleep it happened. I was happy. I was snuggling my boy close to me and kissing his sweet cheeks. As I held my almost three year old and listened to his lullaby music my eyes started to fill with tears. I didn’t mean for it to happen. I wasn’t even sad or thinking of anything in particular but as the tears started to flow my mind took me to places….took me to places I tried not…

To my little super hero, I watch you every day try to reach goals that you don’t realize are set in place for you. I see you struggle to do simple tasks and watch the frustration in your face as you’re unable to grasp a toy on the first reach. I hold you exhausted after hours of therapy and kiss your sweet cheeks and tell you how proud I am of you. Instead of a “soccer mom” I’ve become a “therapy mom.” Daily therapy appointments with your friends that even have they’re own song (written by yours truly) to prepare you each morning. Multiple lab draws and specialist appointments keep…