I started writing this blog because when Abby was first diagnosed I was lost. We were told the rarity of this diagnosis and basically told 'good luck' finding any information let alone other families living with Rhombencephalosysnapsis. So there I was. With this baby who I didn't know if she would ever walk or talk, her twin sister and a diagnosis I couldn't even pronounce. The coming months and years would show me just how wrong the doctors were (and continue to be). First there are other families out there. I have found so many wonderful families living with RS just like us. We share stories and we hold each others hands through appointments. We share things that our doctors would never know. We are a family. They were also wrong about my girl. She walks! She talks! She sasses and makes a mess of her room and eats before prayers and gives me attitude. When she was a baby I would have paid any amount of money to know that the little helpless baby with crossed eyes and who flapped and shook her head would give me attitude and complain about her outfits.
So when I get posts like these: pseudopabloOctober 9, 2013 at 12:25 AM