Dylan Jonathan Lane

My Daddy loves music. Mommy says that he is a “music snob.” (Actually, Daddy says that too.)

Being a music snob, Daddy has always dreamed of sharing his passion for music with his kids. So the day after learning how sick I was, Daddy was determined that I would still get to share in his love for music no matter what! He ordered a special set of belly-headphones for mommy and had them shipped extra-fast. Then, he immediately started making a special playlist of songs that he wanted me to hear!

Before all that, Daddy had taken me (and a very skeptical Mommy) to see a band called Porcupine Tree in Buffalo with Uncle Chris and Aunt Mary. Chris and Mary didn’t know about me yet. But just before the show started, Daddy told them how excited he was that this would be my very first concert!

Then in June – less than a week after Mommy and Daddy found out how sick I was – they took me to Darien Lake to see Darius Rucker and Brad Paisley! Mommy was much more enthusiastic about this concert than the last one. We all had a good time enjoying the show with Grandma and Grandpa Lane.

Finally, in July, Aunt Mary surprised Mommy and Daddy with two tickets to see The Flaming Lips and The Black Keys. Mommy had seen the Flaming Lips years ago, and always talked about how fun and crazy their concert was. She said it was two hours of magic and goofiness that she wished she could see again. As it turns out, when you are five-months pregnant, The Flaming Lips can be a little too fun and crazy. We spent most of the concert listening from the lawn at CPAC. But it was still great listening to the music, and hearing dad muttering about all the “freakin’ hippies.”

Dylan’s Playlist:

1. One Sweet World by Dave Matthews
2. River Man by Nick Drake
3. Cadence And Cascade by King Crimson
4. In These Arms by The Swell Season
5. Les Bouches Du Monde by Gitbox!
6. Which Will by Nick Drake
7. Parachutes by Coldplay
8. The Sweetest Gift by Sade
9. Dream Life by Adrian Belew
10. Alone In Kyoto by Air
11. Love That Conquers by The Swell Season
12. The Road by Zero 7
13. Blackbird by The Beatles
14. From The Morning by Nick Drake
15. When I Get Where I’m Going by Brad Paisley
16. Foreshadowing by Duncan Sheik
17. A Living Prayer by Alison Krauss
18. I Will by The Beatles
19. Father, Son by Peter Gabriel

Sometime in early November, Mommy and Daddy were at Barnes and Noble doing some early Christmas shopping. Eventually, they made their way to the children’s section, where Mommy found the cutest little monkey named Coco.

Mommy loved Coco from the moment she saw him. She thought that he would be a perfect friend for me. Daddy was a little skeptical at first, but once he saw how much Mommy loved Coco, he agreed that Coco would be perfect for me.

Not only did they bring Coco home, but they brought home a lot of friends for him as well! I got to hang out with Scraps (a puppy), Safari (a giraffe), Blueberry (a purple monkey), Cookie (another puppy) and Coco’s twin brother … Coco-2. I had so much fun with them all, but Coco was by far my favorite.

Coco is my bestest bud; he was buried with me to keep me company.

On the day of my funeral, Mommy and Daddy gave most of my friends new homes. Blueberry went to live with Grandma Lane. Cookie went the farthest – all the way to Washington DC to live with Aunt Sarah. Scraps and Safari live with my cousins Dominic and Adriana. And of course, Coco-2 stayed with Mommy and Daddy to keep them company.

On Scraps’ first night with my cousin Dominic, Zia Amalia suggested that Dominic give his new puppy a goodnight kiss. Dominic smiled at his new puppy, said “baby,” and gave Scraps a kiss.

I know that all my friends are very happy in their new homes!

As I grew bigger, so did Mommy’s tummy.

This made it tricky for Mommy and Daddy to find a comfortable way to sleep. Oh sure, every night daddy would go to bed and put his hand on Mommy’s belly and talk to me. But the bigger her belly got, the harder he found it to sleep that way.

Eventually, he started rolling over with his back to Mommy and me.

One night, I’d had just about enough of Daddy ignoring me. After all, bedtime was when I liked to wake up and play! So I told Mommy to roll over and face Daddy, who had his back to us. She snuggled up real close behind him, and …

WHACK! THUD!

“What the heck was that?” Daddy grumbled…

“That,” said Mommy, “was Dylan kicking you in the butt. I think he wants to play with you.”

In late August, I started kicking hard enough for Daddy to feel. About this time, he started talking to me a lot about something called “football.” I didn’t understand it completely, but I got the basic idea.

A few days before the football games started, on an evening when I was doing a lot of kicking, Daddy asked me who I thought would win the Superbowl that year. He said that he would start naming different teams, and that I should kick when I heard the name of the winning team.

He started with some names like “Patriots,” “Saints,” and “Steelers” but I refused to kick, even though he gave me long pauses to kick. As he got to names like “Chargers” and “Dolphins,” he started leaving me less time to kick between names.

Finally, he started hurrying through teams like “Browns,” and “Bills” before I heard the one I liked …

“Seahawks” he said … and I kicked as hard as I could, before he could rush on to another team! Daddy laughed, told me that the Seahawks were an awful team, and mentioned something about getting me to watch more ESPN … whatever that is.

The next morning, Daddy told Mommy and all his friends who I had picked. They all thought it was pretty crazy except for Mommy. She said that Daddy should go bet a hundred dollars on the Seahawks. He didn’t. But he and Mommy swore that if the Seahawks won the Superbowl, they’d become lifelong fans.

Five months later, on the day before my funeral, the Seahawks became the first team to ever go to the playoffs with a losing record.

On January 8, they defeated the reigning Superbowl champion New Orleans Saints, and advanced to the next round of the playoffs.

Unfortunately, the Seahawk’s Cinderella-season came to an end the following week, as they lost to the Chicago Bears 24-35. Still, the Seahawks made me, Mommy and Daddy very proud. In fact, Mommy and Daddy still keep their eyes open for discount Marshawn Lynch jerseys!

On June 11th, Mommy and Daddy went to the doctor’s to see me one more time. The ultrasound technician was trying to see me, but I was not cooperating. After fifteen minutes of fussing, the technician finally got a good look at me. She said that she was very worried and called the doctor in to take a look. At that point, Mommy and Daddy were very confused and started to cry because they did not know what was going on. When the doctor looked at the ultrasound, she said that they were not seeing as much brain as they would expect. She then told Mommy and Daddy that they needed to go see a specialist named, appropriately, Dr. Grace.

They had to wait two hours before they could see Dr. Grace. Mommy and Daddy said this was the longest two hours of their life. They did not truly understand what was going on, but they called their friends and asked them to pray for me.

They finally saw Dr. Grace, who did another ultrasound. He brought them into his office and explained that I had a fatal condition called anencephaly. He explained that my head had not formed properly, as well as lots of other details you can read about at my anencephaly page. He also explained that Mommy and Daddy needed to decide whether or not to keep me for the rest of the pregnancy.

After we left Dr. Grace’s office, Mommy and Daddy called their families to explain what was going on. They spent the rest of the day with family, and did a lot of crying.

By the end of the day, Mommy and Daddy knew that they would keep me for as long as I would stick around.

I’m sure glad they did, because we had a lot of fun over the next six months!

Mommy and Daddy went to the doctor’s at the end of April, the doctor confirmed that Mommy was pregnant. They were very excited. The very next day, Nonno and Nonna Ferruzza came over to our house, so Mommy and Daddy told them. They also told Zia Amalia and Zio Mario. Zia Amalia was especially excited because she was also pregnant with my cousin Adriana! Mommy and Daddy went to visit with Grandpa and Grandma Lane that weekend. Grandma, Grandpa and Aunt Sarah were very, very excited.

On May 14th, Mommy and Daddy got their first glance at me. They started calling me “peanut,” which was a name that stuck with me for much of the pregnancy. Once they got pictures, they went straight to Nonno and Nonna’s house to show them. They also uploaded the photos to show Grandpa and Grandma Lane.

Everyone was thrilled to see the photos … although not everyone was quite sure which way was up!

On April 11, 2010, Mommy took a pregnancy test. Neither she nor Daddy could figure out the result … seriously. Two college-educated adults couldn’t read the thing! Everything you’ve seen in movies, where women are staring at the instructions like they are instructions for disabling an atomic reactor? It’s totally true.

“One line if you’re pregnant, two lines if you’re not.”

Sounds easy, but what if you have one solid line, and one very faint line that you could just be imagining? Mommy and Daddy didn’t know if they should be excited … but they did know they were confused. So a few hours later, Daddy sat down on the couch and waited patiently while Mommy took a digital pregnancy test upstairs. He sat and waited.

And waited … and waited …

Finally, he heard the bathroom door open, as Mommy started walking around upstairs, grabbing laundry and making the bed.

Five minutes later, Mommy came down the stairs and saw Daddy still sitting on the couch.

“Well?” he asked.

“Oh, I’m pregnant” she replied.

“When did you plan on telling me?”

“I just did.”

Touché.