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!