Originally published July 13, 2011
Shelby turned 11 this week. I have no idea how that happened, but it is a reality. I've been thinking alot about how this blessing came into our family and all the adventures since then - so if you'll indulge me: Shelby weighed 9.5 lbs when she was born and no one thought she looked like a newborn. Chubby cheeks and rolls from the get-go. She looked 2 weeks old. With a head full of dark hair and creamy skin, I was told repeatedly that she looked like a porcelain doll.
All parents have dreams for their children. We are no different. But we have had to change those dreams for Shelby many, many times. Our hopes are different and our expectations adjusted beyond anything we could have imagined. When Shelby was not yet 5 months old, she had her first generalized tonic clonic (grand mal) seizure. We landed in the hospital running test after test after test. None were conclusive and Shelby was sent home with the first of many anti-convulsant medications. That initial frightening episode was nothing compared to the scares and heartache ahead. In her toddlerhood, Shelby spent a year making weekly visits to the ER with status epilepticus - ongoing seizures that require medical intervention to stop. One spell lasted an hour and fifteen minutes. The ER staff gave Shelby so much valium to stop the convulsions that it slowed her entire body and she stopped breathing. She spent 20 minutes on a ventilator. I believe those where the longest 20 minutes of my life. My husband and I learned to handle the seizures. We had no choice as medication did little to help. We tried more prescriptions than I can remember. We also tried a surgical implant and a strict, labor intensive diet - all to no avail.
Shelby developed on the slow side of normal until she was about 18 months of age. We saw an abrupt halt in progress at that point. And she has gained little since then. At 11, Shelby still only tests at 21 months old developmentally. Early on, we held out hope that if we could just get Shelby's seizures under control and find medications that didn't leave her in a stupor, that she could learn and progress normally. I begged and cried to try to keep the school from labeling her "mentally retarded" when she turned 6. That was one of the hardest days of my life. It wasn't until Shelby was 9 years old that she was diagnosed with Dravet Syndrome, and we learned that her development was a part of this spectrum disorder - not due to the seizures themselves. And now, Shelby speaks in one word utterances only, wears diapers, needs assitance eating and has trouble walking. Parenting her has been the most beautiful, painful, joyous and heartbreaking gift from God. AND I LOVE HER LIKE CRAZY! For those in the special needs community, the following poem will probably be familiar to you. But it may be fresh to the rest of you. It puts my heart into words perfectly:
Welcome To Holland
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.
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