HOPE – CVI Momifesto

I’m not the same as I was before.

May 8, 2022June 23, 2022 CVI Momifesto4 Comments

It’s Mother’s Day 2022.

I have the overwhelming urge to offer a heartfelt hug to every mother struggling to get through the day.

These past few years have been a series of personal and societal gut punches. The global trauma/dumpster fire of COVID turned our collective anxiety and fear up to 11. Offering a hug now without donning a mask and showering in hand sanitizer seems reckless at best.

We’ve been more isolated than usual which is saying something for parents of children with special needs. The unknown is always the worst. The unknown became the new normal. We limped through it doing our best to protect and support our children. Sometimes we succeeded; sometimes we failed miserably in spite of our best efforts every time. Does everyone remember leaving our groceries in the garage for a couple of days because we didn’t know how long they could be contaminated? Was that really a thing? What just happened? I don’t have the distance on these past years to put them into perspective. I hope that happens some time. I’m not holding my breath.

Punch drunk.

That’s what came to mind recently when I was struggling to finish a sentence directed to my older daughter while looking for paperwork I forgot to send to school and wondering if Eliza got all of her morning meds and why did I come into this room? Would someone PLEASE call my phone? No, I can’t find it again. Don’t judge me. Just. Call. It. Why is my pocket ringing?

I’m punch drunk. To clarify, I do not mean a warm fuzzy feeling after sipping two paper cups of pink froth ladled from a glass bowl at the prom.

I mean something similar to this:

https://media1.giphy.com/media/ErBaCACBcgUlPn5UIJ/giphy.gif?cid=82a1493bbk03hbzbo0pge99aflcixkfzwf7tqncx7705at9s&rid=giphy.gif&ct=g

Where am I going with this, you ask? Wasn’t there a hug offered somewhere in this murky stream of consciousness? (I literally just forgot how to spell “consciousness.”)

Fair questions.

This is the moment that inspired my most recent urge to hug mothers everywhere.

I have the good fortune to speak frequently to parents of children, teens, and young adults with disabilities. A few weeks ago, I spoke with a mother of teenager in high school. The mother called asking for guidance on planning her daughter’s summer activities. She had a checklist with a list of questions. She was polite and professional. When I answered a question, she ticked it off of her list and moved to the next one. She had done her homework and then some. To an outsider, we could have been checking a grocery list or comparing car prices. As a fellow parent of a complicated kid, I recognized the depth of love embedded in each carefully written word, in each checkmark.

There were several questions without answers. Her plan wasn’t “perfect”. I honestly didn’t have much more to offer her. I made a few notes for follow up later. As the call ended, I could see she was struggling with some of the open-ended questions.

I know that feeling. The unknown is always the worst. We research. We ask questions. Sometimes the answers are insufficient. Sometimes they are nonexistent. But, we need them. We struggle.

“I need to tell you something,” I began. “You are doing a fantastic job advocating for your daughter.”

She glanced up from her notepad to look at me closely.

I continued, “You’re very thorough. You’re asking the right questions. You’ve clearly thought this through. This is not an easy process. I wish it was easier. Just because it’s difficult does not mean you aren’t doing exactly what you should be doing. I really it was easier for you and for her.”

The mother was very still for a several seconds. I thought I had offended her. What had I just said? Did something come out wrong?

Her face softened. She sniffed. She reached off camera for a tissue. I sat with her in silence while she wiped her eyes.

“I’m not the same as I was before,” she said softly. “I’m not like I used to be.” It was almost a confession. Something hard to reveal to me, to herself.

Her revelation touched me deeply. I recognized this confession. I’m not the same I was before either. In my moments of dark humor (a must-have trait for moms of complicated kids), I say “I am a shadow of the shadow of my former self.”

When this feeling threatens to take me down (again), I look to the mothers who befriend me, inspire me, cheer me on, feed me, listen without judgment, hand me a box of kleenex, and walk a mile with me despite the sudden storm because it’s my daughter’s birthday and I am just angry at the sky and life and go ahead and strike me with lightning, see if I care.

“You aren’t the same as you were before,” I acknowledged. “You can’t be. You’ve been through a lot. You’ve learned a lot. If you were the same, you wouldn’t be able to do what you do for her. You’re more than you were before.”

Sometimes we need to hear what other people see in us.

“You are a tremendous advocate for your girl. You are a fantastic mom.”

She smiled a little and cried a little more. She shared more about her family and all of the things going on in their lives. She thanked me for my kind words. I told her I just call them like I see them. We scheduled another time to talk and said goodbye to continue our separate good fights.

I found myself thinking a lot about our conversation.

“I’m not the same as I was before.” The sentence echoed in my head as I went about my days, looking for my phone and missing appointments. It resonated. Frankly, these words would not leave me alone. I had to find a response.

Here goes: Ok, I’m NOT the same as I was before. How could I be? I’ve stood toe to toe with doctors, therapists, teachers, experts for well over a decade. I’ve lost days (ok, months) of consecutive hours of sleep. I’ve learned medical jargon to keep up with referrals and follow ups and procedures. I’ve done seizures, nearly fatal asthma attacks, therapies, conferences, g-tube feeds, moves, unemployment, mental health challenges, middle of the night ER visits, serious illness, loss of my mother, death by IEP meetings in 5 states, COVID, desperate – sometimes successful – attempts to keep my children mentally healthy during COVID, starting over again and again and AGAIN. It’s a lot and it’s a lot to share with others.

If I had remained the same, it would mean I had not learned anything from these experiences. I know myself. If nothing else, I am a good student.

So today, I offer this to you and, to myself.

Maybe what we can give ourselves and our fellow beloved mothers is the gift of reclaiming these words for what they are.

We are not the same as we were before. This is a badge of honor. Our motto. Our logo. The words of our first (or 12th – no judgement) tattoo. The signature line. The introduction. The epitaph. A signal of how far we have come, how hard we try on a daily basis. A line in the sand before those who do not understand. The source of great pride spoken loudly and freely to whomever will listen and yelled at those who won’t.

A bouquet of lovely colorful flowers offered to mothers everywhere from one punch drunk mom in MA

We are more. We are more human and everything that being human entails. (Stronger, wiser, wearier, slightly less hygenic – maybe that’s just me, wildly more attractive, meaner when we have to be…you get the drift.)

You are so much more.

With a full heart, open eyes, and open arms, I wish for you the courage to be proud of yourself and everything you do for others. I wish for you the same kindness for yourself. My virtual hug to you from the interwebs.

Happy Mother’s Day!

Up and Moved, Part 1 of ?

October 27, 2018January 19, 2019 CVI MomifestoLeave a comment

Hello Fellow Families of Ridiculously Attractive Children who happen to have been identified with Cortical Visual Impairment!

I have thought about writing a post for so long. There’s so much to say and so little time to get it right. I judge myself and it doesn’t get done. We are in a time of transition. I keep turning inwards into myself and asking the same questions without new answers. There is a familiar feeling of despair nagging at me.

I woke up this morning with an idea in my head. I am going to stop judging myself and get it out there.

I may need some serious help here. I will get to that eventually.

I spoke to my aunt yesterday and I found myself repeating my mom’s favorite saying, “I always do things the hard way.” I used to roll my eyes when she said that.

Now, I have come to understand that when you have a child who is one in a million (quite literally) the hard way is often the ONLY way because you are breaking new ground and learning as you go.

But, not always. My mom could have asked for help more often. The results may have pleasantly surprised her.

The most important lesson Eliza has taught me is that asking for help can bring you information and support you never thought possible. And, if it doesn’t, no harm done. I’m used to doing it the hard way.

—————————————————

Two months ago, we up and moved. (“Up and moved” is a particularly Southern phrase that implies doing something quickly. Which is true.)

Our family’s life circumstances had shifted significantly. My older daughter was about to start high school. There was nothing keeping us in the state of Virginia. I had been taking Eliza out of school half days to do private ABA therapies for various reasons.

I could not sustain the schedule of creating and maintaining an educational and behavioral program for her. It was more than one person could do. I didn’t feel particularly successful at it.

I am used to this feeling – the need to find someone who understands her better than I do. Who knows HOW to teach her to communicate and to engage more with the world. I am used to fighting battles and asking for more than IEP teams think is necessary.

In this instance, I needed to choose my battles and look at the big picture.

Eliza turned 12 this summer.

We needed to think about what we want her life to look like at 22 when she ages out of the school system.

We started entertaining where we would go if we could go anywhere. Eliza would need to be in a state with good educational opportunities, a strong support network and good transition services for when she becomes an adult. My older daughter should be able to start and stay in the same high school. My husband and I would figure out how to make this work. That’s what parents do.

So, we jumped, er, moved. From Virginia to a state that rhymes with Smassachusetts.

Two months ago.

My husband, my older daughter and I packed and carried our house out the front door and into two Pods. We made the trip to Smassachusetts and back to Virginia several times in two weeks. It is not an exaggeration to say there was a little blood, so much sweat, a few tears, and a recurrence of carpal tunnel syndrome. We went through several bottles of Aleve.

It has been intense. Some days I HATE our stuff. Who needs more than 2 towels? Why do we have so many socks? ONE pair of shoes should suffice, people! One pan, one lid. One fork, one spoon, one plate. Throw the rest away! (I get that this is a 1st World Problem. I do. Forgive me. Just had to vent a little.)

And, the files – the medical records and educational records from a decade plus.

A little light reading to relax me –

AHAHAHAHAHAHAHAHAHAHAH, wipes eyes and catches breath, AHAHAHAHAHAAHAHAHAAHAHAHAHAHAHAHAHAHAHAHAHAHA, sniff. Sigh.

Sorry, I couldn’t write that with a straight face.

It’s necessary to decide where to keep them for quick reference. There is so much information – maybe I should let some of it go,

but,

there are still many questions with respect to what makes Eliza Eliza.

Maybe the answer is in one of the reports and science just hasn’t caught up to her yet.

Maybe someday SOMEONE will be able to help me understand what we’ve lived from a medical perspective.

For that, I keep the records, in bags by the bed for now…like the master of domestic organization I am.

We continue to dig out from boxes and piles of laundry.

It has NOT been an ideal environment for a child with CVI.

moving — NOT a great environment for a child with Cortical Visual Impairment

The first few days she was most content sitting in the laundry room clinging to my legs. It made sense. The room is small. Everything is off white – a clean visual palette. The vibration of the dryer was comforting. I sat on the floor with her several times those first few days commiserating with her that we had found the only spot in this new place that didn’t look like a tornado had hit.

Looking at the piles of boxes and clothes and furniture exhausted and irritated me. I couldn’t exactly understand how frustrating it was for her, however, the way she clung to me like a drowning person gave me a good idea.

We made her and her sister’s room first priority to give them a place of respite from the craziness of a move. She is laying in her room listening to music right now. And, now she’s shuffling down the hall.

I will pick this thread up again soon. I would like to tell you what is going on and to see if you have any insight.

From my spot on the distant periphery, I see CVI moms shaking up the status quo and creating real change in their local education and support systems.

It occurred to me this morning that I am not alone anymore.

Until I can share more, I (the master of domestic organization that I am) have a handy dandy tip for families who have just moved.

When you move to a house without a single curtain or window shade and you are in a pinch….

….Halloween decorations make GREAT window treatments! And, in August, they are ALMOST appropriate for the season!

window treatment 2 — Hello SMASSACHUSETTS! We are YOUR new neighbors, you lucky ducks!

What a difference a year makes

September 3, 2018April 20, 2019 CVI MomifestoLeave a comment

Hello Fellow Families of Glorious Children who Happen to Have Cortical Visual Impairment!

One year ago today, I published the first post of CVI Momifesto as a way to vent and to gain perspective of my experience as the mother of funny, strong willed, curious girl who happens to have several diagnoses and who also happens to be cuteness personified.

It’s been quite a year.

I wanted to comment on the year in this post.

But, as happens with life and especially with life with a kid with special needs, a lot happened over the summer. There hasn’t been much time to process or to have a coherent string of thoughts.

I started to write a post about the year and the summer.

This is what I wrote instead:

Over the past 3 months, my girl, Eliza, has turned 12 and graduated from elementary school. She wore the same dress her sister wore when she was 12. She enjoyed being a part of the ceremony, grinning from ear to ear as she walked by all of the kids dressed up in their fancy graduation clothes. She laughed with her teacher. She danced with her dad after the festivities.

This kid.

This kid came into the world defying odds given to us by doctors in starched white coats.
Baby E blk white

This kid turned 12.
my girl E at graduation

There was so much drama around her birth.

The Doctor.

In the whitest coat I’d ever seen,

with the beard trimmed so precisely

I sometimes wondered if it was fake.

The doctor observed us,

the anxious couple

husband and very pregnant wife

from behind the safety of the desk of polished dark wood.

On the wall,

framed diplomas and plaques attested to the

depth and breadth

of his

infinite

knowledge.

On a shelf to my right, a book caught my eye.

“How to Give Bad News.”

(It’s interesting the things you remember at a time like that.)

It was a very serious moment from a very solemn doctor in a very white coat. The moment demanded a lot of “verys”.

Everything was “VERY” in screaming capital letters.

The Doctor told us she would never

walktalkbreatheswallowseehearspeak

It all became one long horrible word to my grasping, uncomprehending brain.

Basically, you name it.

She wouldn’t do it.

As a matter of fact, she would probably never leave the NICU. She would have no quality of life…..medicallyobligatedtoadvisetermination….

He really needs to reread that book. He sucks at this. VERY.

It’s interesting the things you think at a time like that.

Then,

I kid you not,

Eliza – who had not been much of a mover or a shaker in utero – did a full on somersault as if to remind me just who we were talking about here.

The sudden shift in my body

the VERYEST

literal

punch

in the gut.

—————————————

The Doctor,

VERY knowledgeable about many things

the rectangles on walls behind him told me so,

had many other things to say after that.

But, I couldn’t hear them.

Because Eliza had reminded me that she had not been given her say in the matter.

———————————————-

We didn’t listen to The Doctor much after that.

———————————————

She arrived VERY quickly,

about a month later,

on her own terms,

without the horror story he had predicted.

The doctor called me in the recovery room later that morning.

“What gives?” he said.

None of the customary pleasantries you might expect to give someone who has just given birth.

I explained that she hadn’t needed all of the medical interventions he had predicted. No NICU.

A pause.

Then, he said,

not a little smugly,

“Well, let’s see her when she’s 5.”

See that? See what he did there?

“Let’s see her when she’s 5.”

What The Doctor could not know – what I could not know – was that that phrase launched my journey with this kid.

That smugness

that assumption

that five years would prove what a mistake we had made.

The cold clinical certainty that her life would not have value.

And that it was

his

decision to make

Sparked a fire in me that exists today.

When she did turn 5, I thought a lot about taking Eliza to see The Doctor again.

I thought a lot about it.

I entertained many a revenge fantasy about it, to be honest.

Some vandalism may have been very entertaining in a couple of the fantasies, but I’ll just leave that there.

She was keeping me pretty busy at the time.

I ultimately realized

If I did take her to see him,

because she is built a bit differently than your average kid

(whatever THAT means)

He could look at her

and feel completely vindicated.

looking at the same girl,

knowing her the way I do,

would happily introduce

him to her

in all of her unique Elizaness,

(Maybe I’d hire a mariachi band to accompany us to his office for an introduction? Fireworks and a pony for everyone? Too much?)

and feel completely vindicated.

And, there you have it.

Our impasse.

Proving him wrong was not the way to go about this.

There was nothing to prove.

We have a life to live.

I live with a beautiful, challenging mystery of a kid who has screwed up my sleep for the past 12 years. I’m still trying to figure her out. Sometimes I lose my patience. Sometimes she loses hers. She pats my arm and pulls me close for kisses. She loves her people. She is intensely curious about the world. Nothing thrills her more than holding hands and running with one of us in an open field.

I am embarrassed to say that I have only recently – too recently – figured out that she understands more than I gave her credit for.

She loves me in spite of my imperfections. She accepts me for who I am.

We remain a work in progress.

So, a year ago today, I started a blog to get some of these stories off of my heart and out of my head.

There is work to be done, yes. But, we have nothing to prove.

Holy cheese! I just wrote about Eliza’s birth on Labor Day! I just got that! And, it’s 3 a.m. so I’m keeping this ridiculous exclamation right here! Huzzah and so forth!

Good night! Or Good Morning! Or Whatever!

American Conference of the Pediatric Cortical Visual Impairment Society 2018

July 2, 2018July 2, 2018 CVI Momifesto3 Comments

They came! They saw! They chatted over mojitos and exchanged contact information.

The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.

This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss. The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.

The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.

Introducing the PCVI Society!

From http://www.pediatriccvisociety.org –

pcvi business

Image: Three people standing at a podium at Children’s Hospital and Medical Center. Sara Olsen, COO of the PCVI Society, Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president. These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board. Trailblazers they are! Pith helmets for all!

We care about kids with CVI.

The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.

Goals

The mission of the Society will be fulfilled through the pursuit of the following goals:

1. Advance interdisciplinary education and research.

2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.

3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.

4. Improve public and professional awareness of cortical visual impairment in children.

5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.

6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.

On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children. Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.

To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members.

The PCVI Society needs members to help us blaze a trail for our children.

———————————————–

BECAUSE

Children with CVI need to be identified as early as possible.

They need providers who understand the unique needs of children with CVI.

Families of children with CVI need support and education to help their children see the world.

———————————————-

So, I will make you the offer I made the folks at this year’s conference.

For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.

Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!

The pith helmet is for trail blazers! Get it? I forgot to say that at the conference. Also, it’s easier to bring pith helmets to a conference than homemade pie. Speaking of pie…

Images: Above: Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.

Below: Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay. Nothing but the best for our trail blazers! This could be you!

.

http://www.pediatriccvisociety.org/membership/

The future for our children and our families is currently under construction. The Pediatric Cortical Visual Impairment Society is leading the way

Hope has work for us to do

May 15, 2018May 30, 2018 CVI MomifestoLeave a comment

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old. I had been researching CVI and how to modify our home environment for Eliza for a couple of years. We had seen Dr. Roman-Lantzy a couple of times. I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do. CVI might improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

See

Hope

If that is the most passive piece of advice you’ve ever received, then raise your hand – or wait – Don’t raise your hand: Stare at your hand and wait for it to raise itself.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope. I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap. My jaw fell open. I wanted her to ask a follow up question. I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong. Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible. The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference. It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day. Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching. I hope she found the support she needed. I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated. How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live. For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down. For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy. It requires no effort at all. It is dull and lifeless. Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard. Hope requires energy. Hope is fueled by love. Thankfully, love is the easy part. We have an abundance of it.

Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you. Finding them makes you feel less alone. Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope. The hope I know what to do with.

“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

–– Jan Richardson, The Cure for Sorrow

This is what is rattling around in my busy head these days, fellow families. Some days, some years are like that I suppose. Most days I do my very best to listen to what hope tells me to do. There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford. I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.