Well, it’s been a long cold week. John has been super sick, laying around the house, and I’ve been worried about what I would come home to especially yesterday, as I could not get a hold of him and it was a scary feeling. Not to sweet and innocent to talk about, but life is not always easy. He finally got to the doctor today, so I’m hoping things start getting better. He has been sleeping a lot and staying away from Quinn, and I can tell that is hard on her, but we can’t risk her getting sick.
I finally called the neurologist to get results from the EEG today, and they were what I though. The nurse called me back to say Quinn’s brain waives are very abnormal (that is the same as the past, so I should not let it get to me, however....), but she did not show any seizures during the reading. So I wish I could just focus on the positive and say, phew, the motions she takes where she rolls her eyes up are not normal, but they are not seizures and that is a good thing. I believe on a not so emotional day, I could end with that, but after worrying about John, having a few things with the house needing fixed, a list a mile long to get done, and being tired of the cold and just worn out in general, it really hurts to hear that my daughter’s brain reading is “really abnormal”. We have an appointment in a little over a month to talk more about it, but I should not worry about it for now. O.K., when I tell my kids at school not to worry, we’ll talk later, I want them to worry, but honestly, I’m getting good at being patient and waiting. Yes, I know she is not on track, and I understand she is not like other kids her age, but today as I listened to the nurse say those words -"very abnormal", I just let the tears roll down my cheeks. I love Quinn so very much, and I understand our situation, but sometimes the words really hurt my heart.
O.K., let me get it together, wipe those tears away yet again, and focus on the positive. Quinn has been figuring out the crying thing. She knows if she cries like she is hurt, someone will be there to pick her up faster then a speeding bullet, and she did that with me yesterday and with Virginia twice today. I was not sure if something was hurting her, but Virginia said both times she picked her up, Quinn smiled and giggled at her as if to say, yup, you got her fast, thanks, this is working out pretty good.
So as a teacher I understand that the physical written grade on a report card is not the end all be all, and there is much more to a student then their grade, and that is so true with Quinn as well. I know what she shows folks and they all see a different version of her, and although they are all true, they are not all correct. I will continue to advocate for all her abilities and there is a handful of us that see her at her best, and so it is my mission to continue to teach and share our story in hopes that it helps just a few folks to see that kids with disabilities are just as important as everyone else and have just as much to offer. I know I have learned so much and love every eye roll, every miracle moment and every hug, because I know how hard she has to work to share her special moments and I’m so lucky to be a part of her family!
On a calendar note, Quinn had her first physical therapy session with Diana,(yes now we have Diane, our occupational therapist and Diana our physical therapist) she did not show off, but that did not surprise me, she thrives on relationships and needs that before she will show off, and I’m ok with that.
Goodness, I am hoping to warm up mentally and physically. Get a grip and get back to being positive and optimistic. Don’t get me wrong, I’m still there, just a bit of a hick up, and I’ll be back. I think a big Quinn hug in a minute will help. A few deep breaths and a good night sleep and some quality Quinn time and I’ll be good to go.
So I guess a few prayers for all of us could really help us out this week. Just getting my emotions out and into this computer is a nice release though. Thanks so much for checking in on us.
Susan
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