Hello Fellow Mothers of Beautiful Children Who Happen to Have CVI,
We need more Moms on Mondays.
Okay, I do. I need more Moms on Mondays.
I have thoroughly enjoyed hearing from all of the mothers who have contributed so far. I learn something new every time a mother shares her story.
Thank you to Jessica, Mary, Subarna, Tiffany, and Lauren. And, as always, thank you to Bernadette Jackel whose CVI mom experience can be found under The More Things Change widget on the CVI Momifesto home page.
I imagined Moms on Monday as a site a sleep deprived mom might find at 2 a.m. when she has finally gotten her child back to bed only to find that she is too tired and worried to get back to sleep herself.
Just over 10 years ago, when E was a baby, I felt more alone than I have ever felt in my life. The gradual realization of just how many challenges she would have to overcome pushed me farther and farther from “typical” conversations. I became less capable of small talk with friends or “cute kid” anecdotes shared over coffee with other moms.
(FYI New CVI Moms: A lack of cute anecdotes, mind-numbing sleep deprivation, and an IV drip of caffeine for survival makes you less than desirable company at the weekly playgroup. Also, your new deep purple undereye circles and recent lack of personal hygiene don’t scream “I’m available for small talk!”
Then again, maybe you are remembering to wear deodorant and to rinse conditioner out of your hair more often than I did. If so, winning! )
If you haven’t lived it, it’s hard to explain the impossible combination of utter physical exhaustion and adrenalin fueled hypervigilance that thrives in mothers of children with special needs.
I personally found that early morning hours were the worst for this cruel phenomenon. My whole body ached from being awake for too many hours, however, when I closed my eyes, my mind reviewed notes from the day’s therapy sessions or dissected an earlier conversation with the expert of the day. Sometimes I’d remember that I had an older daughter and was supposed to bring snacks to preschool in 4 hours. Good times.
Basically, my off switch was broken.
So, I’d get up and start looking up my questions online, or rummaging through my pantry for preschool snacks. (Water chestnuts and saltines, anyone? Anyone?) Those 2 a.m. research times can be very dark and lonely.
Finding stories from other mothers in the middle of the night when you feel as though you are the only person carrying the weight of your child’s world on your shoulders may be a source of comfort.
It’s equal opportunity comfort as well because it also works for middle of the day, afternoon, and evening worrying.
AND, I think we all know that if there was a marathon for hypervigilance and worry, a special needs mom would win it hands down.
We. Never. Close.
We never close, but our befuddled brains play mean jokes on us. For me, after another night of consoling, bouncing, and worrying, I’d drag myself into a closet. Then, I’d realize the closet was not the shower. So, for a moment, I would forget just why I was standing in the closet. Then, I’d shuffle off to the shower.
I would stand, head bowed to focus the hot water on my aching neck. Staring absently at the tiles on the shower floor, the Barry Manilow song “I made it through the rain” began playing in my head. Every. Single. Morning.
And, no offense, to 70’s soft rock, or Mr. Manilow, but I am NOT a fan.
It seemed less an anthem, and more of a mean spirited joke produced by my declining mind.
Sometimes I’d find myself wondering which was worse, the new routine of 4 hours of nonconsecutive sleep, or the promise of being serenaded by Barry Manilow in the morning. (Again, it’s not YOU, Mr. Manilow. It’s me.)
This is your brain on hypervigilance.
But, I digress.
Please consider joining us in creating a place where moms can find a story they may relate to, or, at least, friendly company in the chaos.
A place where moms can find themselves “respected by the others whooooooo got rained on toooooo and made it throooooooough.”
Forgive me. I’m not proud of that. But, it was right there. (See how annoying it is?)
I came up with some questions you can answer (see below), or do your own thing. There is no right way to share your story.
Send it to info@cvimomifesto.com.
I will notify you before your story is posted to confirm your permission to share.
Moms on Mondays
Introduction: Your first name, your child’s first name and age, the state you live in
(If you would prefer to use an initial instead of your name, fine! If you’d like to share a picture, great!)
About your child: What does she like to do? What makes him laugh? What are her favorite activities? What do you like to do as family?
When did you first learn about CVI?
How were you given the diagnosis?
Does your child have other diagnoses you’d like to mention?
How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)
How is CVI being addressed in your child’s school setting? (If applicable)
What do you know now that you wish you had known at the beginning of your journey as your child’s mom?
What would you tell a mother whose child has just been identified as having CVI?
What would you like for people who have never heard of CVI to know?
Hopes and dreams? Anything else you’d like to add?
Thank you for your consideration. Thank you for your company.
CVI Momifesto 
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