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.

Meggie Miyagi: Guide Dog Lessons Beyond Wax On, Wax Off

Female black lab, Megan, sits in harness looking at the camera
with a focused, serious expression on her face.

My Guide Dog, Megan, is a tiny pocket puppy filled with power.  In our five months together, it has become clear we are quite similar--she is me, on four paws. She is sassy, spunky, playful, and curious. She loves to explore, travel, and experience new things.  She's very smart, thinks things through, takes her work very seriously, and once in a while, she gets really anxious and scared.

As a new team, you are working to build a relationship. This beautiful, expertly trained, furry ball of energy enters your life, and you begin to get to know one another--not just who you were--the dog and the girl--but who you are, two together, the team.  Every day, each route, and every new experience you share together helps you become a team.  Unlike getting to know a new friend, you don't have words--you learn from one another and about one another through the leash, harness, touch, movement, and body language. You begin to recognize and sense how your guide is feeling--happy, excited, serious, focused, anxious, concerned, even afraid.  If you are lucky, you get to observe and experience your guide developing relationships with others as well:  other dogs (pets and guides), friends and family (including their puppy raisers), and their trainers and others who have cared for them. And if you really pay attention you realize that our dogs can teach us so much more than we think. Everyday I learn from them, but these are a few things they've tried to teach me...

1. Your success doesn't impede my success--don't hold one another back, help one another move forward. Help one another grow.

Megan and her best guide dog friend, Samurai, sitting in harness
on a break during a route together.  Both look lovingly up at the camera.

2. It's ok to be afraid sometimes. We are ALL afraid of something.

3. Good friends make all the difference. Let them in. Let them know you. Let them see your fears.

4. When life feels just a little too big and scary, a friend by your side is the best medicine.  Watch out for each other.

Megan, Picassa, and the Toddler watching with great anticipation
as the Tween gets home from school.

5. Play!  Have fun!  Romp around with your friends. Cuddle with the ones who love you. Give hugs.

Sammy (left) and Megan (right) laying on the floor out of harness after
romping around playing together for the first time.

6. Be a little naughty. (Just a little.)  An occasional jump up to hug your person when you're in harness. An occasional sniff of the pee-mail along the sidewalk as you're guiding your human. Inching toward your best friend when you're both working to say hello, I love you, I'm thinking of you. It's ok to be a little naughty. Life is better when it's lived out loud.

7. Be grateful. Tell them you appreciate them. Tell them you love them. Tell them how they make your life different, better. Tell them they make YOU better.

Megan (left) snuggling in blankets with her sister, retired guide dog, Picassa (right)

Our dogs, they may not communicate verbally, but if we pay attention, if we show up, we have so much to learn from one another.

Much love,

Rainbow image with white letters "Nicole"

I'll Be Right Here

The only sounds outside of the hum of the refrigerator are those of Evelyn breathing and the occasional jingle of the dogs' tags as they adjust position. In this moment, all are quiet, and, all but me, asleep.

To my left sits a pile of folded laundry so tall I would have to stand up to see over it. There are dirty dishes in the sink, because the dishwasher is full and running. There are toys on the floor, coloring sheets and crayons covering every inch of the coffee table, and as Evelyn lies here snuggled up on the couch, I know that the to-do list won't change much today.  Whatever was to be done today will be left to do tomorrow.

Because when your baby girl is sick and she looks at you with tousled, sweaty hair, weary eyes, and rosy cheeks, and says in a hushed tone, "Mommy, will you lay here and sleep with me?", you let go of  the pesky expectation that your house should be just so.  You let the folded laundry sit; it can be put away later. You leave the crayons and the paper and the toys all out; maybe you'll play alongside her when she's feeling better.

When that precious little one says, "Mommy, will you lay here and sleep with me?", you set everything else aside, lay down, and respond, "Yes, baby, I'll be right here."