It's been a little over a year since we brought our little boy home from the Vanderbilt NICU. I've tried a couple of times to type out his birth story, but I've decided I'm just not ready to go back to that place right now. Life is good, and for the first time in many many months the great days are outnumbering the scary days. It's a wonderful feeling. Sullivan has been doing so many amazing things in the last month. Every now and then I even let myself forget about all he's been thru and all we've been thru as a family and just live. When Sullivan was 6 months old a friend told me something that truly encompasses where we are right now. She said, "Rachel, it gets better. Right now it seems like you're living appointment to appointment, but one day you won't. You'll just live." Right now I feel like we're living.
From the beginning of our journey, I told God that I knew His plan for Sullivan had to be amazingly big and that I would do my best to be open to where He led us. I've met many many people because of Sullivan's epilepsy and even more because of his craniosynostosis. Several of these people have become forever friends. I've mentored a few moms thru their babies surgeries and recently a fellow cranio mom and I started a facebook page to support Vandy Cranio Moms. It seems like such a small thing, but I've been that mom reaching out and starving for information about what's happening to my child. I know how many questions run thru your head and I can nod knowingly when they say they haven't slept since their child was diagnosed. Our group is growing every day and moms who just a few days ago had no one to turn to now have several veteran moms in their corner. It's a good feeling to know you're there for someone who really needs you.
Is everything sunshine and roses? No. But we're making the best of it. Do I hate that my child has challenges? Yes. Do I wish everything about the last year could have been completely different? That question is much harder to answer. Lately I've been praying for God to show me the next direction I'm suppose to go with Sullivan's journey. We've tossed around the idea of a foundation but we can't decide if it would be for cranio or epilepsy or both. We know that we want to continue supporting the patient families of the Vandy NICU with our monthly snack and Kleenex drop offs, but we also know we want to do more. A few days ago during my quiet time I told God that I was going to quiet my mind on the topic and wait for him to show me where to go next. Sunday night Matthew left to chaperon our church's youth trip to Panama City. As we pulled into the parking lot I immediately noticed the U-Haul and knew I had to take a picture of Sullivan with the artwork. Shortly after Sullivan was diagnosed with cranio, a close friend sent me a facebook message containing just this poem. I've read it many times since, and still can't read it without choking up a bit. I knew this was God letting me know that He was hearing my prayers.
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.