“CVI Moms are the busiest people I know”…and THIS IS WHY

I had quite the action plan this week and I learned stuff.

I learned that if you are up late typing a blog post,  you will fall asleep.  You will delete the nearly finished post when your head bobs, you jerk awake, and your hand slaps the keyboard. Then, groggy and irritated, I learned that when you spend five minutes clicking refresh in the hope that the words will reappear, they will not.

This was not part of my action plan.  Just thought you should know.

I haven’t given up on my action plan, but, the learning lesson with a blog post reminded me that CVI moms are often trying to cram more into a 24 hour day than will comfortably fit.  It’s like the day is a pair of Spanx and we have to fit the elephant in the room into those Spanx.

Every day.

It’s not pretty.  There is chafing.  But, it gets done.

Mostly.  There may be some unsightly bulges and an enraged pachyderm, but, hey, nothing’s perfect.

(I just used the word “Spanx” in a post about vision loss.   I’m thinking this is a first.) 

Dr. Christine Roman-Lantzy often says that CVI Moms are the busiest people she knows. She says this when the need for more CVI endorsed teachers, policy changes, and basic awareness about CVI is inevitably brought up in a presentation.

CVI Moms are often the mothers of children with multiple diagnoses.  We are juggling medical and educational needs while attempting to maintain families, jobs, and, (oh, who am I kidding?) – an identity of our own.   I am mostly failing at all of the above.  And, I have forgotten my middle name.

This week, I have not been particularly successful.  My patience is worn thin.  I speak in short, rushed sentences.  I am behind on making the adapted experience books I promised I would make for E’s classroom.  My dining room table is the insurance/invoice/bill station.  I owe return calls to therapists, the genetic counselor, the insurance case manager, to name a few. I may have walked/fed the dog.  Maybe.  My couch is covered in pictures, more pictures, Velcro, (So. Much. Velcro.), glue sticks, bare books (www.barebooks.com – You need these to make simpler book versions of other books, or of pictures of objects that are meaningful and motivating.) 

This week I was able to correspond with some other CVI moms about some advocacy and fundraising items in the works.  They are getting it done.  They are managing their jobs, their families, and their children’s IEPs.  They are doing the legwork teaching their schools about what children with CVI need.  They are training the educational staff. They are demanding more educational staff.  They are adapting materials.  All of these activities are full time jobs on top of their full time jobs.

And, still, when asked to do something that will help other families like ours, they say “yes.”

They understand that change will come only when we work together.

There will be chafing, however, it gets done.

In the past, relatives have asked me as they coolly examine my never-ending stacks of paper and pictures, my bed head and permanently furrowed eyebrow, “Why do you try so hard?”  At first, I stumbled over my words because I was so surprised by the question.  It seemed so obvious to me.  And, then, in their presence, I felt so alone.

I thought, “No one should ever have to feel this alone.”  I’ve thought that a lot over the past decade.

This is why a community is so important.  The CVI Moms I know are fierce, loving, dedicated, and resolute.  They are some of the best people I will ever know.  Their determination and courage gives me heart when I lose it from time to time. They remind me that I am not alone.  They remind me why we try so hard.

THIS IS WHY.

 

This post and life got the better of me this week because I spend a lot of time advocating for my daughter’s quality of life.

And, then, I don’t feel so unsuccessful.