Tuesday, November 7, 2017

blurry

This morning I had to pull Lucy out of handbells to take her to a doctor appointment at a low vision resource center.  Her eyes are getting worse quite rapidly.  Sometimes it's alarming.  And sometimes it's just sad.  But all the time it makes a spot in my heart ache.  I try to brush it off, and do my best to bury it but it is still there.  And we've got to be constantly aware as to how to help that girl assimilate in a continually more blurry world.  

The other day I got a call from the school nurse because Lucy had tripped over a curb coming in from a field trip, she was all scraped up and her braces were caught on her top, bloody lip.  She has come in from that curb hundreds of times but this time she just didn't see it.

She needs to start using a white cane but she is feistily against it.  She also needs to use the resources her vision teacher introduces but she's mostly against that too.  Her vision teacher called the other day to tell me that Lucy was a little angry in class that day when she couldn't see something she wanted her to read.  Bless that vision teacher's heart, she gave her the benefit of the doubt and knew that she is simply worried, and obviously frustrated.  Lucy doesn't want to admit that she may need more help than the other kids do.  She doesn't want to be different.  No kids do, do they?  

In preparation for this appointment today Lu and I had a little heart-to-heart.  I tried to explain that it's really ok to use these low-vision aids she's being offered.  We can explain to the other kids why she "gets" to use the magnifiers and lights and different computer she's being offered.  And for the first time ever, Lucy broke down and told me how sad she is that she can't see.  She's usually very matter-of-fact with it all and acts like it's no big deal.

But it is a big deal when your surroundings continue to get more and more out of focus and you can't do what you used to be able to.  I can't even imagine.

Which brought us to this low vision doctor today who I was so grateful to meet.  Lucy's vision teacher came with us to the appointment (how awesome is that?), and we got such a great, thorough evaluation.  We found out that her peripheral vision has drastically reduced (which we already knew, but not to that extend) and her contrast vision is rapidly declining as well.  

She recommended Lucy start using a telescope thing when she wants to see things that are far away, strongly recommended we get going with cane therapy, and gave us these little yellow insert things to go behind her glasses to cut down on the glare.

At first Lucy was mad I was telling her to at least give them a try, but by the time we pulled into the school she decided she wanted to keep wearing them, and bid me a happy goodbye with those yellow things clipped to the inside of her glasses.

Now I'm heading to pick her up for lunch...a late birthday lunch she won't let me forget:) We'll see if she's still got them on.

This is mostly just a bunch of rambling, but I want to remember this morning, and the good people and resources we have to help us through this blurry journey. 

It's blurry for all of us in such different ways.

24 comments:

  1. That sounds so hard. If I wasn't a complete stranger (and thousands of miles away), I'd give you and Lucy a huge hug right now.

    ReplyDelete
  2. Sending virtual hugs to Lucy, you, Dave and her Vision Teacher. It has to be difficult traveling along this new path.

    ReplyDelete
  3. You are all in my prayers, Shawni. My mamas heart aches for you, Dave and Lucy.
    In 5th grade I started not being able to see the chalkboard. I couldnt see anything written on it at all. When I had my eyes tested I couldnt see the large E! Needless to say I was prescribed eyeglasses and the next year I went to contacts. Every year I had my eye exams and my eyes got worse and worse and worse. All the way until my late 20's and finally I had an opthamoligist that explained that usually in your late 20's your near sightedness levels off and stays the same. By this time I was legally blind without contacts or glasses. I went from 10 years old to 28 years old thinking I was going to be going blind since my eyes always got worse. I had that sinking feeling in my stomach that eventually I wouldnt be able to see.
    I think though I empathize just a smidgen of what Lucy is going through. It is a scary feeling.
    I am so glad Lucy has such a wonderful teacher, and the support in your area. Aren't there schools for the blind in Phoenix?
    I was wondering if eye transplants are an option for Lucy?
    I think I am rambling my tboughts as well. You are all in my thoughts and prayers to Heavenly Father.
    Jamie Noto

    ReplyDelete
  4. Sending love to you Shawni. What you guys are dealing with would be really hard. Just know there are lots of people around the world cheering your family on.

    ReplyDelete
  5. I was a vision teacher for the last 9 years and 1 thing that really helped my low vision students like Lucy was the accessible features on the iPad. Especially the magnification feature (different than zoom). This was especially useful because an iPad is pretty common and most kids are learning to use them or even have their own iPads so it was a little easier to get my little students to buy into using it in the classroom as needed since it was not a special piece of equipment. You may have already tried this with Lucy, but just a thought. Also, since she loves to read you could sign her up for bookshare and get an app called voice dream reader or read2go. Using those apps she can enlarge the font and change the contrast and even enlarge pictures in certain books if she wants. Again, you probably know all this stuff already, but working with kids like Lucy was my passion and life for the past 9 years. So I just wanted to pass along some tips I found helpful with my students. (I am now a stay at home mom). I enjoy reading your blog!

    ReplyDelete
  6. Hard road to travel.
    Maybe Lucy could have a "trial" just using the cane at home first? Just a thought.

    ReplyDelete
  7. God bless you all. Don't bury the feelings; grieving is natural and appropriate and, in the long run, will help Lucy.

    ReplyDelete
  8. I am so sorry your sweet girl has to go through this!

    ReplyDelete
  9. Sending you love as you navigate these challenges of vision and grief.

    ReplyDelete
  10. Does it have to be a white cane? Could Lucy paint it rainbow colors and cover it in stickers? Would she be more receptive to something bright and colorful that she helped make just her own?

    ReplyDelete
    Replies
    1. A family member of mine has been blind from birth, and he uses a white cane. While the cane itself helps the user to navigate, the color is usually for others. In many jurisdictions, it is mandatory for the cane to be white, so other people (including drivers) know that the person is vision impaired and may not move in a way they expect. In some places in the US, only people with low vision are allowed to carry white canes, and laws mandate that they be given right of way. White is also a highly visible color for safety.

      But, it's still a really nice thought to help Lucy out with colors that she loves! She is so creative in the visual arts. And she is so unbelievably brave.

      Delete
  11. So glad she has you, and so glad you have her. HUGS!

    ReplyDelete
  12. Thank you for sharing your thoughts and heart with us. What a brave and strong girl Lucy is!

    ReplyDelete
  13. Sending love to your sweet girl!

    ReplyDelete
  14. You are bound with determination and full of faith with a sense of the joy in just about everything! That is how you are approaching this and will in the future as well! Lucy and your family are in our thoughts and prayers. With the Lord in charge, you've (with Him) have got this! :D --M

    ReplyDelete
    Replies
    1. I'm re-reading some of my favorite LDS talks ever and as I was reading this one, I thought of you. Your blog has been a tender-mercy for me and countless others, thank you! Also, I hope it brings you a touch of comfort when you need it. --M https://www.lds.org/general-conference/2005/04/the-tender-mercies-of-the-lord?lang=eng

      Delete
  15. I can't imagine how difficult this must be for both you and Lucy. Thank you for sharing and hugs to you both!

    ReplyDelete
  16. Prayers and love to you, sweet Lucy, Dave and the rest of your family. My heart goes out to you, and I can't imagine how frustrating and scary it must be to traverse this path. Lifting you up, and sending virtual hugs!

    ReplyDelete
  17. Oh, how my heart goes out to you and Lucy. It is so hard, but you are a strong family, with strong community support and you will get through this challenge. Our son is physically disabled and uses a wheelchair. One thing that I believe that has helped him through his life is older mentors who are wheelchair users themselves. There are so many great out role models out there. Thank you for sharing your sweet family on your blog.

    ReplyDelete
  18. Best of luck to Lucy (and her family!) as she navigates this difficult change. I'm not yet a parent, but I can imagine how hard all of this must be on everyone.

    As a teacher, here's what I do know after observing many students with special needs over the years: my students who have parents who set high (but realistic) goals and are advocates for them go on to accomplish amazing things. The grit and determination I've seen from some of my students has made me a grittier, more determined person. Everyone's normal looks different. I don't know Lucy, but her big heart and determined spirit shines through on your blog. I think her strengths will take her far!

    ReplyDelete
  19. Prayers to you and Lucy! I have two boys with glaucoma and very low vision. My 9 year old has had an Acrobat LCD camera with a computer screen since kindergarten. He can move the camera anywhere around the room and zoom in. It is fantastic. He also uses it on worksheets in class. Both of my boys have gotten pretty frustrated at times about their visual impairments. The 15 year old is having a hard time right now as all of his friends are starting drivers ed and adjusting to high school. It is heartbreaking as a mom. It sounds like you have a wonderful TVI. Good luck to Lucy!

    ReplyDelete
  20. Wanted to tell you that you all are on my prayer list! It is funny how I have only "met" you through reading your blog, but I have come to care about and love your family nonetheless. I hope it can bring you comfort that prayers are going up to God from all over (these are from Indiana!). God bless you all!

    ReplyDelete
  21. As a mother, my heart breaks reading this post. It's so hard when we can't "fix" a problem for our kids and just make it better. Since she loves Harry Potter, could you call the white cane a wand and talk about the magic that she has within?

    ReplyDelete
  22. Oh Shawni, this broke my mother heart. I know you'd do/give anything for your sweet girl to see. She is a little fighter, I know. And I've admired for years how you advocate & fight for your children. You've inspired me to be the mom my kids need in the arena of life. But I know somedays you'd much prefer less super-hero status if you could just help sweet Lucy. I'll be thinking of you two.... xo
    (One of my colleagues in my master of social work program has a congenital eye condition in which her vision is deteriorating. It has been since she was five, but very slowly. She recently adopted the white cane. She is a total rock star...my age, has two littles, super diligent student. campus has so many resources these days and personal helpers for whatever she may need. love that there is so much more awareness & resources around this these days.)

    ReplyDelete

Related Posts with Thumbnails