Does she see what we see?

 

 

I took C. to see the ophthalmologist this morning. This is nothing particularly new– we’ve been making that sort of trek since the day we brought her home from the hospital.

 

 

“There’s an 85% chance that she’ll go completely blind.”

 

We knew from the beginning that our little girl was going to have beat a lot of odds. We knew she’d have obstacles to overcome. Frankly, you just can’t give birth at 23- or 24- weeks and think that there will be absolutely NO repercussions. Does it ever happen? Sure. But those cases are the rare exceptions, not the rule.

 

 

“Her retinas are detaching. You cannot see without attached retinas.”

 

We signed on for four eye surgeries before C. even hit her due date. Before she was even five pounds. It boggles the mind.

 

 

 

“With this surgery, there’s still a 15% chance she’ll go completely blind, but we have a much better chance of hoping for some correction.”

 

We drove to Chicago, trailing the ambulance that transported our daughter from Indy. Right in the heart of the city, the hospital there overwhelmed us, but we didn’t hesitate. We’d been told there were three retinal surgeons in the entire country qualified to operate on an infant still so pre-term. We felt fortunate that one took on our daughter.

 

 

“I’m pleased with how it went, Mr. and Mrs. S. I think we saved them. But she’ll always have visual impairment.”

 

And so we knew she’d always, always, always need glasses or contacts. “Can they do LASIK?” some well-meaning friends and family asked us. We’d shake our heads no and point out how lucky we already were. We don’t really expect everyone to understand.

 

 

 

“She’ll get her first glasses in time for her ten month birthday.”

 

And she fought them. She hated those glasses– until she got old enough to really need them. Little babies are most interested in the things close to their faces. The glasses just annoy them. But toddlers? Toddlers are on the move. Suddenly, she kept them on.

 

 

“Can we consider contacts now? Would that help?”

 

At four years old, her world opened up. For the first time in her entire life, she had peripheral vision. Her depth perception grew stronger. Her motor planning improved. “Look! There’s a bird in that tree!” She saw things she had never before seen. We wept with gratitude that she had been gifted with even more sight, even as we laughed to ourselves when, again, well-meaning friends would ask, “Does she put them in herself?” (Spoiler alert– NO.)

 

 

 

“She’s struggling. It’s catching up with her.”

 

Even with contacts, C. doesn’t have perfect vision. Not even close, really. Actually, if she’s allowed to control where she holds the paper, she can read very small font. Her distance vision, with both eyes, is capped at 20/60, but it’s far worse with one eye at a time.

 

Her ability to compensate and navigate her space with no correction is phenomenal– she is FAR better at getting around without contacts than I am– and my vision is a whole lot better than hers. We believe that’s because she’s never known any better. She’s been severely visually impaired from birth, so she’s adapted to work around that.

 

But it’s still not perfect. And we’re starting to see her try to work through that.

 

 

“She’s frustrated. She’s falling behind.”

 

This is the first year that C’s poor vision is taking a toll. The rigors of academia are increasing. She is expected to read more, write more, and be able to scan and refocus between materials more frequently.

 

While her reading skills are A-OK and right on grade level, she struggles with fonts. She has a hard time looking from a blackboard (or smart board, which is what they use now) down to a paper, even with a slant board. Her handwriting is larger than her peers, because that’s what she can see. She has to use special paper. She has preferential seating. But, still…

 

 

“We want to do everything possible to help her succeed.”

 

We are pursuing extra services. Actually, our school is spearheading that campaign and, again, we’re so fortunate to be in this district– I hear so many horror stories from other parents of children with disabilities, delays, or impairments.

 

 

“We will make sure she has everything she needs, but I want it documented. I will fight this entire year if that’s what it takes.”

 

C’s teacher is frustrated by the paperwork and rigamarole in order to get the right people involved, but she refuses to give up. The doctors are on our side, too, offering to complete whatever documentation is necessary to get her the best support possible.

 

 

And, again, we are lucky.

 

C. can see.

 

Let me repeat that one more time– C. can see.

 

Can she see what we see? I’m not really sure. She doesn’t know either, because this is as well as she’s ever seen.

 

We get a lot of sympathetic looks and pitying remarks from kind people who feel so very bad for us and for C.

 

What I want you all to know is that we’re not feeling defeated. We do not feel cursed. We do not feel like C. is coming up short in any way.

 

She can see.

 

And we– and the amazing, dedicated team behind us– are determined to help her make, and get, the most out of it.

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8 comments to Does she see what we see?

  • Marci

    She is such a blessed girl. Not only does she have her mama and daddy looking out for her, but also an amazing teacher. :-)

  • Way to go mama!! You have such a positive attitude. My little guy was full term and has very limited vision. We are so thankful he has some vision. There have been a huge learning curve as far as figuring out all the necessary school stuff. My little guy will be 13 on Saturday and is a straight A student. If your interested in any of the school accommodations we have used along the way please do not hesitate to contact me! ;) sending love and prayers for strength!

  • Melissa D

    Our 5 year old had laser treatment for ROP (26 weeker) and she struggles with handwriting. I never thought about it being a vision thing! :)

  • Susan

    Your second picture looks just like my Matthew. We couldn’t hold him for 3 months so he wasn’t super teeny tiny when we first held him. Matthew just had his annual preemie eye check and so far, so good. Good luck with C.

  • earleyml

    I love your positive outlook on things! It’s wonderful that you have such a supportive system around you. :)

  • C is a champ. And thank YOU for putting challenges in perspective.

  • Elizabeth c

    Hi,
    I was a premie like your daughter…2 lbs, 7 oz. ,27 weeks. I was blind my first few years, had my first eye op at 4, have had 3 more as an adult, including retina reattach ment. I was also virtually blind for a few months while recovering. I face the risk of going blind at some point. I have cerebral palsy, and lung problems, and compromised immune system. I also face the risk of losing the ability to walk…soon. Currently I use crutches ( indoors on level ground, can walk by myself). I’m 31. And in college my professors said I was too disabled to student teach, so they wouldn’t let me get my teaching degree. I had wanted to be a teacher since I was 3. BUT…I changed schools, changed majors, and graduated college with nearly a 4.0 (3.96 to be exact). AND IM A SECOND GRADE TEACHER…in ASIA (in a country not friendly to disabled people). So even if your daughter has severe health challenges, she can and will still succeed. I’m proof. I’ve lived in this country a year, and I love teaching. I’ll stay here as long as health permits…may not be too much longer, though. I understand about the visual difficulties. I’m cheering for her, and for your family. I wish her ( and y’all) success. I hope she reaches and exceeds her dreams!

    • Thank you so very much for taking the time to comment and share your story, Elizabeth. What an inspiring tale you have! I love hearing and reading out other tough preemies who are such fighters– I am truly in awe of all you’ve accomplished. Yours is the sort of story that will serve as inspiration for girls like my C. as she continues to grow and persevere. :)

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