Dear Mom and Dad, I never quite knew how much weight and fear you carried as the parents of a rare disease child. Looking back on it now and having honest conversations with you about it, I now see how much you had to push through to put on a brave face for me and … Continue reading A letter to my parents from your rare daughter
Tag: parenting
Parenting a child with CLOVES • by Julie, a CLOVES mother
My daughter asked me to write about what it’s like to parent a child with CLOVES Syndrome. When I started to think about what to write, I realized how hard it is to put into words as it is such a unique experience given the rarity of CLOVES Syndrome. Our journey began when Lindsay was … Continue reading Parenting a child with CLOVES • by Julie, a CLOVES mother
PeaceLoveHeal 