Friday morning I took Bailey to the doctor for what I hoped would be assurance that what we thought were seizures were something else, something simple and easy. Sadly that wasn't the case, and my fears were confirmed with a rush to the hospital for an emergency ct scan. The rest of the morning was a blur till I found myself in an ambulance for the first time with my 5 month old little girl having seizures in her carseat that was strapped to the stretcher. When we arrived at UMC it was raining, hard enough that I had to cover my head, but the sun was still shining all around us. I feel like that's where we are now, it's raining but the sun is still shining through.
Bailey's seizures can last anywhere from 1 minute to 3 minutes. She had one earlier that lasted nine, it was the worst one yet. She ended up having 9 yesterday and as of 6:30 pm today she's had six. Hopefully she won't have anymore today, but it is doubtful.
Tomorrow is our D-Day. She has all of the major tests tomorrow. She'll have her kidneys and heart scanned to see if she has tumors there too. They'll have to put her to sleep when they do the MRI.
We're all still basically in shock. We're doing pretty good but we do have our moments when we break down. We're trying to stay in the moment and not think about the future too much.
Today is Father's Day, but it's taken on a whole new meaning right now. Father...the only one who can heal Bailey and give us strength. Please continue to pray for our sweet little Bailey. Tomorrow will be a hard day for all of us.
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