I vividly remember diagnosis day. I recall scouring social media and connecting with families from across the globe. I watched videos of other children affected by congenital disorder of glycosylation. I soaked up words of advice and encouragement. I thought I knew what our future would bring. The one thing I wasn’t ready for was the spectrum of severity. I wasn’t prepared to be severe. I’m going to be honest and tell you that there are so many days I feel inadequate. I feel like I’m not doing enough for our son. I question that we should be doing more, I wonder what else there is out there. I search…