in the beginning of october we took a 4 hour road trip to visit a pediatric geneticist. in june our neurologist suggested we visit a geneticist, just to make sure we weren't missing anything genetically related to her seizures. having been in good health (seizure free for almost a year) and showing consistent development, i believed this would be a "nothing" appointment. check in, all's good, check out.
really, erika? really? since when have we had one of those appointments since this whole journey started a year and a half ago????
maybe that thinking made the weeks leading up to the appointment easier... but it certainly didn't help when the doctor uttered ... has me concerned several times.
the good: she has been seizure free for almost a year. she is developing. all her tests have come back negative. her last EEG and MRI were good.
the bad: she had seizures, source unknown. she is behind developmentally. just because one test comes back negative, that doesn't mean there isn't something else that shouldn't also be tested. the distance between her eyes, the size of her forehead, and the height of her nasal cavity are all bigger than they normally see. WHAT??? yeah, that last one kind of put me over the edge. what does all that mean? well, maybe nothing. but maybe something. so we're doing another test. sigh.
every parent wants to believe their child is perfect. perfect health. perfect development. perfect looks. perfect health got stripped from me awhile ago. followed by the development. all of the sudden, my beautiful baby girl had freakishly large eyes and forehead and nasal cavity. i hate saying that, but it is an honest confession of where my mind went. i went to bed that night thinking that everything about her face was crazy-like out of proportion.
and then i saw her the next morning.
and the LORD spoke psalm 139 over my heart,
for you created my inmost being; you knit me together in my mother's womb. i praise you because i am fearfully and wonderfully made; your works are wonderful, i know that full well.
beauty. that is all i see. inside and out. special. chosen. joy. beauty. my baby girl.
if there is something different about her face, the LORD has chosen it for His specific purposes. if there is something different about her health, the LORD has chosen it for His specific purposes. if there is something different about her development. the LORD has chosen it for His specific purposes. for my good and His glory.
really, this is where i want to stop, but just so you know what's next... we wait until december when she will see a metabolic specialist. this doctor will examine her occasional tremors (in hands and eyes), which was noticed by the geneticist. he will decide if he wants to do any testing, in regards to the tremors, and then we will also complete the test ordered by the geneticist. and then... we do life. we return home and do life and continue to watch God's plan unfold in our lives. the doctors may be concerned, but my God is not.
