This year I noticed something different in all of the pictures of Ivey's birthday. This was the first year that there were none, no not one, somber face caught in any of the 400+ pictures. This year we truly celebrated - Ivey's birthday's are always a sweet reminder of life, real life, and all that it takes to live it. She wraps it all up in a pretty package for all of us. That's her gift to us. But this year- all of us- have learned to find the sweetness in all of life's lessons.....This year I see only pure JOY in all the pictures - Godspeed baby girl...my 'beautiful girl'
YOU ARE SURROUNDED BY LOVE - LITERALLY
All in all we collected many many books for Georgia PINES to be brailled for all of Georgia's blind/visually impaired or deafblind children. What a great gift to pass on...literacy.
Given that Ivey has a cleft palate that was pretty severe and extended far into her soft palate, even after repair, and years later, it has left her with some precarious cranial and teeth issues. So here we are, back at Scottish Rite doing a little OR time to help alleviate some pain and address a few other odds and ends. And after many years needing a port for immunoglobulin infusions, it has been officially removed. Infusions have been replaced with Sub-Q infusions. So away it goes.
The thing about the term "nonverbal" - it isn't always accurate. Technically, it's a terrible label. I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'. You see, this terminology leads others to assume Ivey can’t communicate. Oh, she communicates. Quite well I might add. My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally? And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute. Remember there was a time when I could apply the humivent on her trach as an on/off switch. This came in handy in church. Well, that was until she figured out how to use her finger to cover the hole... years since decannulation it's been game on. Literally.