June 18th was exactly a year ago that Bailey was rushed to Batson after a CAT scan reveiled tumors/tubers in her brain and confirmed that she was in fact having seizures. I will NEVER forget that ride in the ambulance and feeling so helpless as I watched her have seizures in the carseat that was strapped to the gurney. I will NEVER forget the sick feeling in my stomach when at least 7 doctors came in and stood before us as they gave her clinical diagnosis, Tuberous Sclerosis Complex. I'll NEVER forget bursting into tears when we went to eat and a little girl, who's Daddy was holding her, looked me right in the eyes, smiled and waved at me. We will NEVER forget that time or the fear and heartache that we felt because our baby girl was sick.
Because we went through those times, it makes the sweet moments so much sweeter, the laughs so much funnier, and her accomplishments so much greater.We will NEVER take any smile, laugh, or even temper tantrum for granted. We are so blessed, we are so unbelievably blessed. God carried our family through it all and continues to do so. Bailey has overcome her obsticles by leaps and bounds.
One year ago, she wore an EEG hat...
...now she wears a princess hat.
One year ago, we had pain in our eyes...
...and now we have laughter.
One year ago, she showed no emotions...
...now she is a smirk giving, raspberry blowing, camera loving silly girl.
One year ago, her brother could only love on her...
...now he can play with her.
One year ago, she needed help just to roll over...
...now we need help just to keep up with her.
One year ago, she fell asleep exhausted from seizures...
...now she falls asleep exhausted from playing, swimming, etc.
We are so proud of Bailey and how far she has come in just a year. Bailey didn't get to play in her smash cake on her birthday because she was still in a medicated "fog". We gave her another cake this weekend so she could have another chance. She took it!
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 maybe 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! All my life I 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 that 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 go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Taken from Children with Visial Impairments Edited by M. Cay Holbrook, Ph.D. Copywrite by Emily Perl Kingsley 1987