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.
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.
Mobility and language. She is so very 'finished' with the stool in her path. Not to mention that she is dragging the feeding pump behind her. Pre-teen life in our house. She's told me she was 'finished' with me a time or to...Now how to discipline this little creature?
On the 11 Christmas, our girl enjoyed opening her gifts for the first time. Where she keeps holidays, especially Christmas (and Easter), real and grounds us in the purpose of the season, it was fun, literally heart warm, to watch her enjoy the packaging. This my friends is a first. It was a milestone.
And then there was this. A gift for Ivey. Or, is it a remote controlled car for Matt?
Reminder: Getting lost in the monotony of feeding tubes, suction machines and medications has taken a swipe at me. Juggling education needs verses medical needs, finding a somewhat balance has zapped some energy. Feeling pulled from every imaginable direction, just flat-out overwhelmed some days. But, I need to do a better job of remembering. The simplicity of happiness. Joy in an unplanned moment. The now. The little things.
Saturday in Target I had a little angel remind me. As Ivey and I were weaving through the racks looking for her a new pair of footless legging, a woman walked past us. She stopped. Looked at Ivey. Took two steps. Came back to us. She looked down at Ivey and said hello. Then put her hand on my arm and asked if it was okay for her to ask 'what's wrong with my daughter.' My trained reflex said, "There's isn't a thing wrong with her, but she does have some medical complications". She said, "Oh I know, but I wasn…