“What if Christmas…perhaps…means a little bit more!”

Good morning fellow families of adorable children who happen to have CVI,

This post is about gratitude for people who made my Grinch’s small heart grow at least 3 times this year.  (It’s just not the holiday season until someone quotes the Grinch.  You’re welcome.)

1. Javier

He is the kindest bus aide I have ever seen.  (And, believe me, I watch.) He does not know I am writing this, so I will call him “Javier.”  Javier greets us every morning with a big smile. He gallantly offers her his hand as they count the bus stairs together.  He asks her permission to help her scoot over and tells her when he is putting her bus belt on.  Eliza smiles when she hears his voice.  She takes his hand without any reservation.  She knows she is safe with him.  Because of this, I would offer this man a kidney without any reservations whatsoever.

Javier has seen me in the most mismatched excuses for sleepwear/sportswear as I roll out her chair every morning.  The man has never seen my hair brushed, folks.  He has also chided me for going out in the cold without a coat. In the rush of the morning routine, I hadn’t realized I needed one.  My mother would have approved.

Here’s the thing that GOT me.  One day, as Javier lowered the ramp to load her wheelchair, I noticed he was wearing a suit and dress shoes.  I thought maybe he had a job interview or a court appointment.   I didn’t think anymore about it, until a week later, when he wore another suit and tie.  I complimented his outfit again. He smiled, a little embarrassed by my effusiveness.

I realized the suit was a regular sort of thing, so I complimented him again the next week.

Javier shrugged and smiled.  “I just want to look professional.”

Shivering in front of our house, wearing mismatched socks, grubby sweatpants, and my husband’s t-shirt, I took that in.

I remembered one morning early this year when I went to Eliza’s school to watch how the bus transition was working.  Another bus carrying children with special needs was in line before Eliza’s bus.  The driver opened the door and came down the stairs to unload the equipment.

That guy wore a t-shirt that said – well, how do I put this?  The shirt had the emoji that most resembles chocolate soft serve (if you get my meaning) and it said “@#*t happens.”

What kind of message does a shirt like that send to the children and their families? And, to the other students?

Scowling, I watched “Mr. Soft Serve” lower two very complicated kids in wheelchairs to the ground without a word or a touch.  He transferred the boys like he was delivering boxes for UPS.

When Javier told me, a little sheepishly, “I just want to look professional,”  I realized the effort he put in to look his best for my girl and, I suppose, for me.

I had a sudden urge to hug this man and to make him president of the universe.  I did neither, since a restraining order from our local school system is one headache I do not need.  They already think I am weird enough.


2.  5th graders rule the world

Eliza attends morning meeting at a 5th grade classroom in her school.  She goes in with an aide and her IPad or a Big Mack button to answer questions.

She also goes in with the widest smile I have ever seen on her face.

The students have welcomed her.  They call her by name when she comes in to see them and when they see her in the hallway.

Earlier in the semester, their teacher, Mr. K, and the principal allowed me to give a brief presentation to this class.  I talked about her diagnoses, especially CVI.  I asked them to identify themselves when they greet her because she has a hard time identifying people – even people she knows. I explained that she has difficulty with depth perception so she may walk unevenly and she might need to hold someone’s hand.   I told them it is a challenge for her to take in too much information – visual and auditory – at the same time.  I asked them to be patient with her and to understand that she can understand them, but that she needs more time.

Eliza’s teacher has been instrumental in scheduling the time necessary for these vital moments of social education for her.

This week, she sent me a few pictures of Eliza and some of the 5th graders outside during a break.  They were walking with her, holding her hand.

These are the first pictures anyone has ever given me of Eliza hanging out with a child who is not her own sister.  So, there’s that.  Where ARE the tissues when you need them?

Ifyou read an earlier post, you may remember that 3 of the girls have come up with a project to make a communication device for Eliza.  They prepared a PowerPoint for Eliza’s teacher who sent it to me.

The girls met with us to try different materials for the switches.  They showed me, um,  wires and things, and there was a laptop involved… ok!  I don’t get this stuff!

As I sat there and tried to understand the technology speak coming out of their mouths, I realized

  1. They will be leaders some day. 
  2. Their compassion and their technological expertise will create new opportunities for children like Eliza. 

Last week, they presented their project to the PTA who agreed to fund the materials needed to make this device.  

They met a kid.  They were curious.

They saw a problem.  They came up with a solution.

They found a way to make it happen.

We will see what happens next after winter break.  I am looking forward to learning from these young ladies who are as kind as they are intelligent.

Yes, when 5th graders rule with world, we will all be just fine.

hands together

Here’s to the people who are gifts in our lives.

They brighten our days just by caring and extending a hand.


Published by

CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cerebral/Cortical Visual Impairment. Families of children with ocular visual impairment belong here too. Welcome! We are in this together.

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