Last Thursday, Juniper, Coley and I went to our quarterly appointment with Dr. Luke. Lately, I get excited for these appointments (a stark contrast to the early days), because they are sprinkled with reassuring words.
Right now, at 15 months, Juniper is doing great! She will be seizure free for one year in a little over a month, she’s sitting up on her own comfortably, she’s very alert and social, she’s babbling a few syllables here and there and she’s tolerating a crawl position better and better every day. She’s even getting braver and showing more interest in exploration and adventure. She smiles and laughs frequently and most importantly, she still connects with me through her eyes in a unique, deep, special and spiritual way.
Upon entering the examination room, Dr. Luke showed us the same smile she'd been showing us for about the last 10 months worth of appointments. A smile of reassurance, encouragement and hope. She told us that June was continuing to exceed her expectations, as she handed June her reflex hammer. We discussed the pros and cons of weening June off the Topamax in July. This will be a tough decision: Is the Topamax hindering her development anyway? If we take her off the Topamax and the seizures reoccur, will the Topamax work again? There are no answers for these questions today. We must accept the unknown and go with our gut, to some extent.
Coley, Juniper and I sat together on an adult-sized examination table, as June ate Cheerios and Dr. Luke spoke to us from her swivel stool. Dr. Luke asked us: “Have you read ‘Welcome to Holland’?” I saw glimmer in her eye when I told her we hadn’t - the same glimmer I had seen in the past each time she brought us good news. Sometimes the most significant knowledge a doctor can share has nothing to do with diagnoses, prognoses, treatments or medications. Aside from the difficult decisions we would need to make in the coming months, I left Dr. Luke’s office with one immediate priority: To read “Welcome to Holland.”
A quick Google search brought us right to the 371 word reflection, written by Emily Pearl Kingsley in 1987. I was five when she wrote this and I was living in Atlanta, GA, though Kingsley might say I was living in Italy. I’d never been to Holland and wouldn’t visit the beautiful region for another thirty years.
In “Welcome to Holland,” Kingsley maps out a beautiful metaphor, a juxtaposition of “normal” life (a planned trip to Italy) and life with a “special needs” child (an accidental trip to Holland).
I read the piece to Coley as she drove home from our appointment. It begins with Kingsley describing preparation for her trip to Italy in beautiful detail and outlining the comparison with normal life. She then describes a plane ride that drops her in an unplanned location, 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,’” she writes. I knew what she meant. She emphasizes that Holland is not a "horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place." I kept reading.
- Kingsley speaks of the hardships and stresses of acclimating to arriving in an unplanned 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." Coley read a lot of books about parenting before the girls were born, but they didn't include anything about how to handle seizures, torticolis or infant feeding challenges. We bought a lot of essential equipment, like cribs, bottles and blankets, but we never thought to get syringes, pill crushers, sensory brushes and vibe sticks. We had prepared for Italy, not for Holland. I looked at June in the baby mirror. She was in her car seat, passing a small toy between her tiny hands. Up to this point, we had been able to give her everything she’d needed. I felt grateful.
- Kingsley speaks of overcoming the initial shock and of the an enlightenment that eventually comes: "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." Upon reading this, I felt the wind come through the windshield of the van. You might say this is impossible. Perhaps you just don't understand what I mean. Along the way, barriers were breaking down. I've had my trials with finding peace.
- Kingsley speaks of the heartbreak that forever bends the corners of the mind after a great loss: "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." It is a loss to find out that your child will have special needs. It's a poignant one. It's the death of a dream. I looked over at Coley and I could see tears streaming down her face. Grief is a persistent opportunist.
Kingsley ends on a line that collapsed the valves inside of my own heart: "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." I looked at June in the mirror again. Not only had we given her everything that she needs, but she had given it back to us. Juniper is tulips and windmills and Rembrandts. She evokes all of the senses. She's not moving at a slow pace, we are moving too fast. Juniper is Holland.
We sat still at a stoplight as I finished the last line. Cars passing across the intersection in front of me and remembered some of the most difficult moments of my life. I remembered those moments passing by and looked to my left to revisit them. There, Coley was sitting in the driver's seat, sobbing. She and I sat and grieved. We mourned our loses, celebrated our gifts and realized, together, that we had found our place in this world.
We sat there in Holland...and everything was just beautiful.
Thank you, Dr. Luke, for sharing this with us. I hope we will see you in Fort Worth, this time as old friends.
I hope anyone that finds this post and reads Kingsley’s words gets as much comfort out of it as we have.