It's in her eyes. . .

As a young girl, I always felt like there was something special about me - like I was destined for something - - something special or unique. And, although my parents were always very loving and extremely encouraging, I don't remember this being a resounding message in our home. So where this idea of a life purpose came from, I have no idea, but what I do know is that this question was ever-present in my mind.

When I was in the 5th grade and got a standing ovation for my performance as Mrs. Claus in the Christmas play at my school, I remember thinking, "This must be it - I'm going to be a famous actress!" But then sixth grade came, two elementary schools merged to one, and I was no longer the only girl with a lot of personality. The star role of Dorothy went to another famous student actress and I got the Tinman – most likely because of my impressive height. . . "I guess that's not it."

Through middle school and even my early years in high school, I remember rehearsing my speeches or answering the many questions of the intrigued yet imaginary reporters that I talked to in the long mirror in my room. One day it would be because I was the most popular yet kindest girl in school, the next day it would be because I was the true inspiration for the most popular boy in school who was also my boyfriend. . . all of these reasons were imaginary as well I might add.

I would certainly have been mortified if my parents or my brothers ever caught me "talking to myself," but I did it anyway - for several years! I did it long enough to actually wonder whether it was normal. "Do other teenagers do this? Maybe they do but no one knows because who would admit to doing it?" I remember asking myself. And now, looking back, I wonder sometimes whether this role playing actually pacified me. I was yearning to answer this question of my purpose and until I could, I played it out.

When I was fifteen, I met one of the cutest boys ever - but he was different from the others, he was deaf. And the very next day I went to our school library and checked out "The Joy of Sign." I learned how to sign the lyrics of all my favorite songs and, as a result, was able to piece words together to form my own sentences - only in front of the mirror in my room of course - - when I actually tried to sign for REAL communication purposes, my mind would go blank. But this feeling of being able to help other people really sat with me. I loved the idea that I could potentially be the bridge between the deaf and the hearing - how special that would be. . . THAT must be my purpose!

So special education became my passion and the summers of my sophomore and junior years, I decided to acquire my community service time for my college applications by volunteering at the Charleton School - the very school that Reily now attends. I worked in the 5 to 7 year old class and loved every second of it!

My senior year in high school I had one extra elective class to fill, so I chose to serve as a tutor/mentor to one of the mainstreamed special education classes. These students were my own peers that I and many of my other classmates really never saw. Their classrooms were always at the very end of the hall and they stayed to themselves pretty much.

They were excited when I got to their class and we would start each period by talking about things we related to - outside of our academics. Then we would move to whatever assignments they had - an addition mathematics worksheet or a reading comprehension assignment. I was conscious of the fact that they looked up to me and that any words of encouragement I offered them, they would eat up. They wanted to impress me and, as a result, I would express my pride or surprise with their accomplishments regularly.

My experience with the cute boy, Charleton, and my special education friends only reinforced my desire to help kids - not typical kids, but kids that most people are afraid to interact with. - - “THIS is truly what I’m meant to do! I am going to be a special education teacher! I am going to be the best special education teacher in the whole United States. I am going to develop some special techinque that will help these student be successful, prosper, and surpass most people's expectations!"

I was so convinced that this was my life's purpose that, during one of my interviews for a college scholarship, I remember telling the panel, "I know I'm going to do big things. I love watching 60 Minutes every Sunday and I just have this feeling inside that one day they'll be doing a piece on me." I must have been pretty convincing - all those imaginary interviews probably helped - because I got the scholarship, but, honestly what kid says stuff like that?!

So off I went to college to be a special education teacher. Temple University - Big college, big city - the perfect place for someone with big dreams! But, as life would have it, the "lovestruck" part of me rationalized me returning home, and after a year and a half of an impressive academic run, my dream of purpose became a dream deferred.

Drama, turmoil, and hard life lessons followed over the next several years and drowned out the once ever-present yearning to find my destiny. For some unknown reason, however, the question returned with a vengeance the night of my 29th birthday. I was a single mom with no degree, a full-time job in accounting (of all things), a mortgage, and an unsteady relationship. . ."What are you doing and where are you going!?"

This awakening resulted in an "all about me" approach to life. I was determined to find the answer to this question but my approach would have to be modified. I had more than me to think about now - I had my eight year old daughter Kori and financial responsibilities I had to consider. It wasn't just about me anymore. . . And the resounding question was no longer just about me, but about her too - what is HER purpose??

Quickly I returned to school, still continued to work full time and raise my daughter. My education goals had changed - no longer was I going to school for special education. "Why should I? I'm already in a career in business, might as well take advantage of that." But I was moving forward, no longer stagnant or in the same place mentally or emotionally. With my new drive and outlook on life, my personal life also took a huge turn for the better as well and a little over a year after my "awakening," I married the love of my life. . . "Maybe that's my purpose? To be a loving, supportive mom and wife. . . That'll work, I guess."

And it did - for a little over a year . . . But a few months after the birth of our daughter Reily, the true answer to that burning, lifelong question erupted out of my soul and heart with fury. The realization that Reily would have special needs rang a bell inside me that had been still for so long. And all of the pieces from my past started to come together.

My impressive debut as Mrs. Claus in a gym full of observing adults prepared me and planted the seed of confidence to advocate publicly for my daughter who cannot speak for herself. My fondness for the cute boy equipped me with the basic sign language knowledge I needed to communicate with Reily's teachers and administrators at the Delaware School for the Deaf that she attended for a year. My volunteer work at Charleton eased my anxiety about Rei's experience at a "special" school. And even the drama and turmoil that I experienced for several years toughened my skin and made me realize how strong a person I truly am.

I've found my purpose - It's there in her eyes. She doesn't say it, sign it, or even point to it - She just looks at me with her exceptionally beautiful eyes and I see it there. "I'm your purpose, Mommy. You can do it. You will fight for me - You will fight for us. You will help families like ours. You've got everything you need now. I know you can do it - I love you," Reily's eyes tell me everyday and I am filled.

Everything's "fine". . .

The moment Reily Marie Johnson entered the world at 6:35 am on September 13, 2006, I knew there was something different about her. Unlike most newborns who stretch their lungs with their first taste of air, Rei didn't make a peep. Instead, she quietly gazed around as she limply hung in the nurses hands.

In contrast to our 12-hour induced labor, her trip through the birth canal was so quick that her face was bruised and swollen. Her crimped brown hair adorned her perfectly round head that appeared small in comparison to her fleshy torso. Her eyebrows were neatly arched over smoky gray eyes that appeared somewhat empty. Her quiet lips were distinctly my husband's but her long fingers were definitely mine. And at seven pounds, four ounces, she seemed massive to me and I was instantly pleased that I had fed her well.

I did express my concern to the nurses and doctor about her lack of cry and lethargy, but was assured that it was only because of the stadol that I had received intravenously - I too had felt out of sorts so I didn't question their response. . . at least not at that moment.

The room which seemed quite large prior to Rei's birth seemed to fill and close in around me shortly after. I quickly felt over stimulated and almost stuck inside my head - overwhelmed with the buzzing of medical equipment, flurry of nurses, and instinctive need to inspect my little one for myself. Those who know me well, are very familiar with my everpresent need to be in complete control, but for the moments after Rei's birth I could barely even concentrate. At times, I would close my eyes just to be able to focus on the voices that were instructing me to sit up or lay back or those congratulating me on our newest addition.

I can't quite remember all the events that led up to us leaving the birthing room and ending up in our private maternity suite, but I do remember the sense of relief. The sense that I, or really we, had escaped below the radar. And honestly, I really didn't understand why I felt that way. I remember thinking maybe all moms feel that way right after they've just pushed a living human being out from their womb?? - but I didn't remember feeling that way with Kori - - but, then again, that was a decade before. . . Or maybe it was because Rei didn't cry upon her entry to the world - isn't that what all babies do when they're born?? - - but they're medical professionals and I'm not. "Everything's fine, Steph. Enjoy your new baby," I remember telling myself.

And looking back over the past three and a half years since Rei's birth, I can say today that everything was and is fine. But, oh, how much my definition of "fine" has evolved. . .

My New Found Love for Holland

I have often described my personal transition and acceptance of our youngest daughter Reily being "exceptional" as entering and feeling my way through a completely foreign world. A world with a different language (relating to medicine), different people (mainly doctors, therapists, and social workers), and a slower pace of life where little things are never taken for granted.

Little did I know that I was not the only exceptional mom who has felt this way. One night when I was milling around the house, I came across a book I had moved from place to place a million times - Chicken Soup for the Soul: Children with Special Needs. I've always thought these "Chicken Soup" books were kind of corny so I really wasn't interested in it when my mom first gave it to me. . .and looking back, I don't think I was really quite ready to digest the heroic and bitter sweet stories of "special needs" kids and their families. I wasn't yet ready to really face it.

Then one night I stumbled across the book once again - and this time it was different - I was different. Instead of moving the book out of the way to yet another spot in our dining room, I decided to delve in. I snuck upstairs, laid on my bed, and opened the book. And I remember it actually taking mental energy to do it - almost like the first time you're about to plunge into the pool on a hot summer's day. . . You know it's gonna feel good once you're completely submerged, but it's that initial leap - the thought of that first shocking chill - that causes you pause. . . That's the feeling I had. And very much like that summer's day, I held my breathe and leaped into the book. And how happy I am that I did because that initial plunge took me to the essay that personified the exact feeling I'd been trying to express since Reily was weeks old.

Emily Perl Kingsley is another exceptional mom whose essay, Welcome to Holland validated the feelings I'd been carrying with me for so long. Her words brought me comfort and, more importantly, excitement to explore and really appreciate all Holland had to offer me and my family. . .

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

To Blog or Not to Blog. . .

So I have to admit that I've become intrigued by the idea of blogging. . . After seeing my sister-in-law's beautiful blog where I get to keep up with her, my brother and my adorable nephew and then reading the blog of another "exceptional" mom I just recently met, I thought maybe I'd give it a try (as if I don't have enough to do already). The more and more I thought about it, the more the concept evolved in my mind from a self-indulging posting tool to a potential outlet and autobiographic draft. . . My best friend's always said I'd write a book one day - - maybe this is the beginning. . .

So I guess we'll see how this goes. I'm sure it's going to take me awhile to get a hang of this since I'm not the most web/technically-inclined person but the process will be interesting at the very least!