In all my years, I never envisioned living life with steadfast grief. Not grieving the loss of a child. Grieving the loss of the life I saw for my child. Grieving the loss of the life I envisioned for my family. I am the firstborn...type A...the rule follower...a closet organizer. I appreciate and crave order. But grief has no playbook. And it leaves behind one hell of a mess. Denial Zella the zebra came into this world in mostly the same way as her older three siblings. There was no fanfare upon delivery, just another silently breathed prayer of thanks followed by a slew of sleepless nights and tongue-tied nursing struggles. The diagnosis that followed her arrival nearly 18 months later caught us off guard. We were determined to make the most of it, and honestly as an ... [Read More]
Results are in.
Helsmoortel-van der Aa syndrome. Zella has an incredibly rare genetic disorder with a CRAZY name. For now I'll refer to it as ADNP syndrome, its' other name. Here are a few characteristics of the disorder (as per OMIM)... *hypotonia*feeding problems in infancy*recurrent infections*short stature*joint laxity*hand abnormalities*congenital heart defects*seizure activity*vision problems*dysmorphic facial features*intellectual disability*sleep abnormalities*severe reflux ...and the list goes on and on. Thanks to a $22,000 test done by GeneDx, we have our answer. But only thanks to our Lord do we have the strength to continue to help Zella grow and develop into the person He made her to be. To our knowledge, this syndrome does not look to be one where she will end up regressing, although it ... [Read More]