Don't Cry Mama... Every Little Thing is Gonna Be Ok....

Mom-Worry is different from any worry I've ever experienced in my life.  It's stronger and more direct to the heart than any worry I've ever had for myself or other family or friends.  We worry that they'll get hurt, that they'll get a sunburn, that they'll wake from a nightmare and feel lonely and scared, that they won't make friends, that they feel included, that they learn and develop and grow with this concept of "normal" and "developmentally appropriate" as our guide.  We tell them to be careful, to look both ways before crossing the street, to use their words, to stand up for themselves.  We tell them lots of things.  And then we give them a hug and they walk out into the world and make their own decisions and try new things and test their boundaries and grow....  And we watch, and pray, and trust....  I've felt Mom-Worry with the Tween, especially around social interaction and difficulty developing friendships with peers at school, and around some things with her academics years ago.  But, it's been a little while since I've felt this level of Mom-Worry....

The Tween practicing violin.

Today, we dropped the Threenager off at Preschool and as she ran off to play at the sand table, we had a mini-conference with her teacher in the doorway.  See, after returning from three weeks of sick time in February (she does two days of preschool per week, so in the Life of Threenager, three weeks is a Very Long Time), we began encountering some challenges.  Her first day back, she had her first meltdown at school...  and it was Epic.  She screamed and cried inconsolably for over an hour, until she tired herself out and finally fell asleep on her nap cot.  Her teachers and early ed supervisor tried everything they could to calm her--and when that didn't work they called us.  Now, she has shown us some pretty epic meltdowns at home, but this was the premier performance at school.  While the Husband and I know that she calms from one of these meltdowns by sitting alone in a quiet space, and that trying to help her through it tends to aggravate her more, school didn't know that.  We picked her up early that day, and we both approached the following weeks with apprehension, wondering if this was a one-time, out of sorts, very bad no good day kind of thing, or if this would be a persistent issue.  A couple of weeks passed with no issues.... and then Tuesday, two emails, two meltdowns, not as epic as her premier performance, but still challenging.  She doesn't handle transitions well.  She doesn't handle change well.  She's the youngest in her class--so she has room for development and maturation.  She's incredibly bright and creative, highly verbal though she doesn't always choose to use her words, she can focus for hours on a task, and she draws and colors like no three year old I've ever met.  We know these things and we're working on them--encouraging her strengths and trying to work on her challenges.  Some days I worry that there's something more going on for her than just normal Threenager stuff, and other days I'm convinced that this is Three, this is what Three looks like, and it's so, so hard, but we'll walk through it together and Four will be better.

The Threenager's drawing of a Whale Shark:  Blue marker on a white paper.

But, today, standing in the doorway mini-conferencing with her teacher, I felt tears prickling at my eyes, I felt my throat tighten as I talked through those feelings of worry, uncertainty, and powerlessness.  Worry that this may not be Three, uncertainty I guess regarding my parenting...  am I doing something wrong, and powerlessness because when she's at school there's so little we can do.  We can communicate and continue working on these things at home.  School can communicate and we can all share ideas or tell each other if something is working.

As we walked toward the car, the Husband said to me, "It looks like you're having a harder time with this than I am even." and I didn't say anything, because I knew he was right.  Instead, the tears that were threatening before poured down my cheeks as we walked out of the school into the cool Minnesota breeze.  As I sat down in the car, I thought to myself what I tell Mom-Friends all the time...  "This too shall pass.  Don't be so hard on yourself.  Don't fear, Mama, everything is going to be alright."  I can't tell you how many times I've said these things to friends...  Friends who were struggling, or who found out that their child is on the autism spectrum, or has a disability that they had never envisioned as they saw their beautiful, precious, perfect unborn child by ultrasound, or held him on her bare chest immediately after he was born, or while decorating the nursery and reading "What to Expect When You're Expecting".

And I thought...  How must my Mother have felt???

She spent her entire pregnancy dreaming, hoping, getting to know this perfect little baby inside of her, growing, kicking, even the tiny little hiccups.  She labored for hours upon hours to bring me into this world, knowing with every horrendous contraction that she was about to give the most incredible gift possible, the gift of life.  And then, there I was...  Beautiful, but different.  Wonderful, but presenting a new world filled with uncertainty...

They handed her this stunning baby girl, with the white hair of an angel, blue grey eyes filled with the sky on one of those perfectly peaceful dreary days, and the fairest skin imaginable.  And they told her...

"She has albinism.  She may be blind."

And, she cried.  My grandma cried.  My family cried.  This was not what they had dreamt of.  This was not what they had hoped for, or prayed for, or expected.  This was not what they knew.  And they worried.  And they feared.  Would she be blind?  What would she see?  Would she succeed?  Would she make friends?  Would she be ok?

"Don't Fear Mama.  Every Little Thing is Going to Be Ok."

She WILL be ok, she will be more than ok, and so will you.  She has YOU and YOU are perfect for her.  She will face challenges, struggles, adversity.  She will fail sometimes.  But, she will learn.  She will find her way and YOU will help her.  She will amaze you!  She will do great things.  She will do hard things.  She will find and embrace her beauty and differences--it might take a while, but it will happen.  Believe in her.  Believe in yourself.  Believe in the dreams you had all of those months as you waited to meet her and wondered who she would be.  Those dreams are still there, getting to them just looks a little different now.

And, I know that whatever this is that's going on with our Threenager...  Whether it's Three, or whether there's something more, it's going to be ok.  I need not fear.  I need not worry.  She is our precious gift, and we are perfect for her.  Every little thing is going to be ok.

Closeup of Katie and Evie reading a book together.  Evie is sitting next
to Katie in our oversized living room chair and pointing at the book.

Leave the Acting to Hollywood: Embracing the Authentic Self and Blindness

Image of yellow post it note with red push pin with
the words "OUT SICK" and a sad face.

Once again, I must apologize for the lapse in writing...  You guys, living in Minnesota right now is like living in a petri dish full of the flora and fauna that make up nightmares scarier than any monsters under the bed.  The Toddler spent the vast majority of the month of February sick.  She missed three WEEKS of preschool, I had to pass my volunteer commitments off to someone else for the month, and I cancelled every Braille class I had planned to attend.  I made it through the Toddler's three weeks of Sick unscathed and then, as she returned to preschool, BAM, it was my turn!  I can't complain though, the forecast for today shows a high of FIFTY-FOUR degrees, in February, in MINNESOTA, and my sniffling, sneezing, coughing, stuffy-nose, watery-eyes self WILL be outside!

That all has nothing to do with today's post, other than to apologize for my status incommunicado.  This week while I've been feeling under the weather, I've had some seriously amazing opportunities to "meet" new people.  A friend began blogging her adventures as a new mama with a disability, which you can follow here, and I couldn't be more thrilled!  She's a super-cool chick, a strong woman, and mommyhood looks so perfectly beautiful on her!  Yep, she has a disability, and her perspective and experiences will be a great addition and insight for others to learn and grow from, and to contribute to the world of advocacy, ability, and parenting.  While I was busy sniffling and sneezing, some really cool things happened!

Me, Picassa (my retired guide dog), and one of the
Blue Men in Las Vegas.  Few can remind you that we're all
meant to be unique and impact this world in our own way
than the BMG.

Meeting new people and growing new friendships has a way of reminding me of where I've been, how I've gotten where I am today, and the long and sometimes painful road it took to get here.  Throughout my childhood and adolescence, I was a far different version of myself.  When I was really little, I didn't give much thought to my differences in appearance, or whether I was sighted or blind.  In elementary school, I didn't make friends very easily, I was shy, and while I didn't have the self-awareness to know it then, I lacked self-confidence.  When I began as a new student in second grade, I didn't step out and try to make friends.  I sat alone on the playground, and as fate, and the kindness of one incredible kid would have it, one of the most amazingly confident, beautiful people I would ever meet came up to me and asked me to play.  It is amazing to me to look back now, as a strong, confident, bold woman, and remember how little of that was present in me, and how much of that was present in her, all that time ago.  I don't know if she ever realized how much her role in my life impacted me--as we were growing up, over all those years, I remember looking up to her, admiring her confidence and leadership, coveting it even (We went to parochial school, I never heard "Thou shall not covet thy best friend's confidence!").  As much as I admired her, I had to take my own path to find those things for myself, and it took many years, and so many experiences, for me to find that.

As a child and teenager, most people didn't know I was blind.  Sure, they knew I was "different", the white hair kind of gives that away.  But, my blindness, nope.  They may have known I couldn't see as well as they could.  But, I didn't use a white cane, I hadn't been introduced to assistive technology or the alternative techniques and skills of blindness, and past the point of early elementary school, access to large print became less and less available, so I did more and more of my work at home, where I could lean as close to my books as I needed to and squint my eyes as much as the smaller and smaller print demanded.  I participated in everything I needed and wanted to, acting like I wasn't nervous when visual tasks were involved, trying not to worry about being hit in the head with a ball, pretending I wasn't afraid that I would miss my spot in a gymnasium or performance and embarrass myself in front of a huge group of people.  I was scared to cross the street until I was in my early 20s and attended Adjustment to Blindness Training (ATB), which means that when I went for walks around our neighborhood with my kid brother and sister, THEY were the confident ones, and when they said, "No cars!" I hoped and prayed they were right!

I was one hell of an actress.
I was one very scared actress.
I was one very lonely actress.

The amazing group of friends I had in high school in Illinois.
My family moved to Minnesota when I was a junior in high school.
The childhood BFF is the furthest left in this photo--she's stayed just
as awesome and has only become more beautiful over time!

The thing about being an actress, instead of being your own, perfect, different, authentic self, is that it's a ridiculous amount of effort and an awful lot of work, and fear, and worry.  And the longer I acted, the more I believed the lie that my differences, my abilities, my blindness, and myself with all of these things as part of who I am, weren't perfectly and wonderfully made.  Further, I had built a community of friends, family, and acquaintances who, when they learned I was taking several months away from "normal life" to attend ATB training were..... Confused.  Years later when I chose to work with a guide dog, and would encounter and reconnect with a friend from my childhood or high school years, they would ask if my sight had worsened.  But, those several months, surrounded by other blind people, learning that I could do everything I needed and wanted to do, gave me the confidence I needed to explain these things, to answer their questions, and to realize that it was my exceptional acting skills (hah!) that had resulted in their confusion and curiosity in the first place.

I didn't attend a full ATB training program, rather, I spent a summer between college semesters learning how to navigate and travel independently with a white cane, cook and manage household and independent living tasks without my vision, utilize computers and technology with assistive technology, access books in audio and electronic formats, and I began learning Braille.  I lived in an apartment in a busy and lively part of Minneapolis, and  That time in my life was instrumental.  It was necessary.  Though I didn't know it, that time in my life would be the beginning of me becoming "me"...  Confident, strong, happy, ready to take on and experience the world and all that was to come, "me".  The "me" who knew that my albinism and my blindness are just pieces of me, just like my silly sense of humor, my quirky and kind of sick love of crafting, cleaning, and organizing, my constant love of learning...  Embracing my authentic self has been so much better than acting ever was.

Embracing my authentic self led to embracing life and love.
Nothing could be better.

Hello, My Name Is...

Pink and white "Hello my name is" label

I realized the other day that in the time since I began this blog, I've shared a few craft ideas and projects, some information regarding blindness and my opinions around advocacy and "inspiration", but I have not shared much about myself, my cause of blindness, or my story.  Some of that will be shared over time and made evident through related posts, but I wanted to take a minute to share a little bit about myself and my story, especially with a number of new people following the blog.  I don't know if I will end up reaching more readers over time or not, and I'm perfectly fine with that.  My hope is that I may reach even one person in a similar situation, or one parent raising a blind child, who my story may resonate with.  It is only through sharing our strengths and our struggles that we may gain strength from one another.

I hold many roles in life.  I am a wife, mother, daughter, sister, friend, and advocate.  I love reading, writing, singing, the arts, crafting, and creativity.  By profession, I am a vocational rehabilitation counselor and have worked with the general population (people with all disabilities) and the blind population (solely serving blind, visually impaired, and Deaf-Blind individuals).  Currently, I work within our home as a stay at home parent.  I am sensitive, hard-working, compassionate, determined, and fiercely independent.  I am forever in search of growth, development, and learning--striving always to become the very best "me" I can.  I am also blind.

My guide dog Megan and I while attending a gala fundraiser
for a local blindness skills training center, Vision Loss Resources.
I am wearing a formal black dress and pearl necklace and Megan
is seated next to me in harness and wearing a pearl necklace.

So, here's the medical low down:

My blindness is due to a genetic condition called "Oculocutaneous Albinism".  In common culture and media, you may have heard of a person with albinism, or you may have heard someone being referred to as an "albino" (more on that later, but I highly suggest not using that term to refer to people).  Hi there friend, that's me!  If you break it down, this means that my skin, hair, and eyes are affected by a lack of pigmentation.  As a result, my skin is very fair, my eyes are a light blue/gray, and my hair is very light blonde.  Contrary to the suggestion of popular media, people with albinism have neither red eyes nor magical powers (too bad really, it would be beyond awesome if I could snap my fingers and have my kitchen clean itself!).

Photo of my parents and me when I was very young.   You can see
that my parents both have normal pigmentation.  I am the only
person in our family line with albinism as far as we know.

There are different types of albinism, something research has only shown over the course of the last 10-20 years, so there is a great deal of variety in both physical presentation (hair, eyes, and skin shades) as well as a large spectrum of visual impairment.  There are individuals who have only Ocular Albinism, in which case the lack of pigment is only present in the eyes--otherwise they have normal pigmentation of the hair and skin.  The spectrum of visual impairment with albinism is incredible to me.  I have friends who have very little visual impairment and are able to drive and safely function as a sighted person.  On the other end of the spectrum, I have friends who have only light perception and some shape recognition, while this is very rare, it does happen.  My visual acuity falls between 20/200 and 20/400.  I am "legally blind", a term originated by the Social Security Administration defined as:

1.  Reduced central visual acuity of 20/200 or less in your better eye with use of the best eyeglass lens to correct your eyesight; or
2.  Limitation of your field of view such that the widest diameter of the visual field in your better eye subtends an angle no greater than 20 degrees.

Definitions are great and all, but most people ask me what "legally blind" means, their question of course referring to "how" I see, and how my residual vision functions.  I would caution you that visual impairment and blindness have so many causes and interactive factors that the answer to this question is entirely individual, and it is very difficult to explain.  I have never seen out of eyes that function correctly, so I have no period of time of perfect eyesight with which to compare my eyesight.  With the medical description in mind, they say that what someone with 20/20 vision can see from 200 or 400 feet away, I would need to be 20 feet away in order to see.  That seems an inadequate description though as well because even 20 feet away I suspect what I see is blurry and very non-descript compared to someone with 20/20 eyesight.  I have substantial photophobia, to the point that, if I am outside on a sunny day or I am walking through a store with fluorescent lights, I typically cannot keep my eyes open, sometimes even with sunglasses on.  My vision is also very poor in darkness with periodic lights (an example would be night time in a residential neighborhood with street lamps and outdoor house lights).  In those conditions, my residual sight is rendered useless.  When conditions are such that I can see, what I see is typically lacking detail, and I suspect blurry in comparison to what someone with 20/20 vision would see.  My functional vision also declines as the day goes on and my eyes become fatigued.  Those who are close to me say that my nystagmus (repetitive, uncontrolled movements of the eyes) is a tell-tale sign when I'm becoming more tired as my eyes move more as I get more tired.

Me, dressed up and ready to go to a fundraiser
for our local library with a theme based on
Mad Men.  Hair, makeup, and my blue rockabilly
dress were all chosen to compliment the theme.

While I've been blind since birth, I didn't learn most of the alternative techniques and skills of blindness until I was in my late teens and early twenties.  The phrase "times change" is so true--when I was a child, kids with albinism were given large print, seated in the front of the classroom, and otherwise taught to function as a sighted person.  There are many problems with this, not least of which is that it was difficult and dangerous.  Difficult in that it took me substantially more time to complete homework assignments because I was straining to use my vision.  Difficult in that I frequently had terrible headaches and neck pain due to poor posture while trying to read and the strain on my eyes and body while trying to use my vision.  Dangerous in that I have no idea how many times I fell or ran into something because I didn't see it.  Dangerous because my eyesight is unreliable and there I was relying on it for things like crossing the street.  Dangerous because this expectation of passing as a sighted person set me up for many years of faking it, pretending I could see better than I could, hoping I was crossing when it was safe instead of knowing it was, low confidence, and shame around the fact that I was blind, shame that kept me from using the tools of blindness regularly even when I was given them.  I don't want this to be misunderstood--my parents and educators did what they thought was best for me.  The access to information, community, and advocacy that parents today have was not present when I was a kid.  My parents did the absolute best they could with the information and professional guidance they had at the time.  If I had been born ten years ago, it is very likely that my parents would have been encouraged to teach me the tools and techniques of blindness, simultaneously offering me access to large print and visual materials.

As it was, my parents never allowed my blindness to result in low expectations.  They expected inclusion and full participation, responsibility, proficiency, and high academic performance.  They expected me to strive for my highest potential.  By maintaining high expectations of me from day one, my parents set the stage for success in all areas of my life--including as a blind person.

So, welcome to my world!  I realize this is by no means a thorough introduction, but I will continue to share over the course of the next few weeks!

Until Next Time,

Vertical rainbow striped background with white letters spelling "Nicole"