Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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Father Daughter Dance 2011 - delayed pictures...but she was the belle of the ball
Last night I got my girl bathed and dressed for bed. Our usual nightly routine. Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery. The routine is necessary. We discuss what will happen to her once her surgery begins. Who will be with her. Possible things she might feel and hear. I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of anesthesia and that she may not know where she is, but mom and dad will be close by, just waiting to get to her. I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart. They will be as gentle as possible. And as always, this is the point where I cry. I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is best for her, permitting only what is deemed 'medically necess…
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.