Wednesday, February 15, 2012

Senses

I've been running this update around in my head for a few days, and I just can't seem to come up with any sort of eloquent way to write it or any stories that will tie it all together. I guess sometimes an update is just an update, nothing more and nothing less. We got some news last week, it has been hard on us but we are trying to take it in and decide where we need to go and how we are supposed to get there.

 At Olive’s last appointment at the Big Hospital in December she was 20/270 in both eyes, it isn’t great but it was hopeful that both eyes were the same, which was our short term goal. We patch her “good” eye to strengthen the “bad” one for an hour a day; it is the most heartbreaking hour. As soon as we put the patch on her she starts screaming, arching her back and flailing her arms around. We usually feed her with it on so that she has something to keep her occupied. We also have to put mittens on her because she will just rip the patch off, so we deprive her of strengthening her motor skills during that time.

Last week, Sean took her back to Portland because I had to work and couldn’t get off to go with him. I knew things were worse, but I thought it would be a minor change. It had been my understanding that any vision that she gained is what she would have, we can strengthen her eyes but the condition is not progressive, things should not get worse. But they did. She is now around 20/300 in her “good” eye and somewhere around 20/600 in her “bad” eye. We have been told to try patching her for 2 hours per day. It is so hard… I can only feed her for so long and keeping her occupied is getting harder each day, she just wants to explore all the time.
The other day I picked her up at daycare and she didn’t recognize me until I talked to her. If I’m not right up in her face her eyes are looking at my mouth instead of my eyes. These things aren’t huge but I realize that they are so typical of the blind population. She is part of that population. I am sad and scared, but I’m also a little excited for all of the things that we are going to learn together. I’m looking forward to all the amazing people that we are going to meet.

When I get right in her face, with our noses almost touching she gets this big squishy, toothy grin and grabs my face like “Hey! I know you!” At least I know that she knows what I look like, and she certainly knows what I sound like. I ran out of perfume the other day and was thinking about getting something new. I think Olive knows me by smell too, I wonder if new perfume will throw her off at all? Should I pick something that is likely to be around for a long time, something that she will smell as an adult and think of me? Just like my own memories of Chanel No. 5 and my mom… I think we all have memories associated with all of our senses, what are yours?
originally uploaded by LyndzK1.

5 comments:

Lyndsay said...

I feel like I've already asked you this... but have you read this poem:

http://www.our-kids.org/Archives/Holland.html

And I love the idea of a signature scent that Olive (and Natalee too) will always associate with their mom.

Karen said...

We are worried about her vision too but it's out of our hands. We will all have learn how to help her. I'm glad you have fond memories of my perfume. My Dad always wore Old Spice and if I ever see it, I smell it and think of him...I wish he could have seen all his beautiful great-grandchildren.

Carly said...

Thank you for keeping us informed. I know this must be terribly hard. You are such a good mom, Lindsey! Keep up the good work. Funny you should mention the scent...I think my kids are starting to know when I walk in their rooms in the morning by my morning breath :) Ha!

Jenni said...

I really appreciate this post and your Perfection post. Both so insightful. I agree, with Griffin, I wouldn't want him any other way. When people linger when they look at him because they notice his eyes shifting, I fight the urge to say, Stop staring, he's perfect!

I love all the things they have to teach us about REALLY seeing and experiencing the world.

Thanks again for your lovely and honest posts!

Sew, what now? said...

Oh sweetie! I don't normally comment just lurk but I feel like I NEED to so here goes. When I was little I went through a lot of hub-bub with my left eye. Originally the doctors (this was way back in the 80's) put me on patch therapy to help. I had worse than 20/600 at that time. I ran in to everything! I couldn't see anything and I tried to rip it off whenever someone wasn't looking. My parents gave up because they felt sorry for me and I looked so pitiful. Please keep at it! PLEASE!!! I know it's heartbreaking to watch but it's better to do it when they are young and developing than to wait( I've started patching again 30 min a day). Remember she doesn't know that her sight isn't for lack of a better word "normal". Patch at bath-time (it should help her relax) and when you take the patch off give her whatever positive reinforcement you wish. Treat it like any other milestone. Well I could go on forever but I'll end it here. Good luck, God bless and email me if you have questions or just need a listening ear! :D jezzileigh@gmail.com