A Loss We All Feel

Ironically my last post was titled Feel No Pain, yet pain is exactly what I feel right now. Yesterday, one of our PIGN kiddos, passed away. Although we never had the opportunity to meet this little boy or his family, we feel his loss in an incredibly personal way. He had a sweet smile, wonderful personality and was adored by his family. He had an older brother who loved him fiercely and interacted with him at his level, just as AJ does with Teddy. He had devoted parents who adored him despite the challenges that come with the intense needs of a child with CDG. 

His parents' grief touches my heart because it could so easily be our grief. I've felt this grief before when we've lost other children in our group. It doesn't get any easier. In fact, it gets harder. 

Although it's most likely that Teddy will die because of his CDG-PIGN diagnosis (or related reasons such as his utter disregard for safety), I manage to disassociate from that thought most days. It hit home when good friends of ours lost their son unexpectedly early this year. His dad made the comment that his son's genetic disorder didn't come with a shorter life expectancy like Teddy's disorder. That comment struck a chord with me, as did Dave's response when I shared it with him. Dave's response confirmed the reason he spends so much time worrying, and worries so much when Teddy gets sick, is that he recognizes that any illness could be the one that takes Teddy away from us. Dave believes this worrying will help prepare him should that day ever come, and I acknowledged I don't feel there's any way I can mentally prepare for that.

Despite having those conversations, that thought still too much for my heart to hold. So I continue to distance myself from those thoughts. Yet times like this hurt my heart for this sweet little boy, for his family and for what could be our future. I know there are others around the world, whose children have PIGN, who are crying the same tears and sending prayers and love. So if you're a person of faith, please include this sweet soul and his family in your prayers today.