Wednesday, May 16, 2012

The preschool program and the letters in Jake's body

Tonight was Jake's preschool program / graduation. He has loved being in Ms. Stephanie's school and we were really excited to see him and the other kids do their songs. Jake has been practicing the line he'd been asked to deliver, he's been practicing the ASL alphabet and things like that.

But this afternoon another one of his headaches came. It must have been a bad one because at 4 o'clock he just wanted to go to bed. Annie gave him some children's Tylenol and he went down for a nap. I woke him up at 6 o'clock to eat and get ready for his program and you could just tell that he was hurting. As he stared at his dinner he said "Why did I get a headache?" I told him that sometimes he gets headaches if he eats too much candy. Annie said "But you didn't really have hardly any today, did you." I said "Sometimes you can get a headache if you are playing and you bonk your head. Did you bonk your head today?"
     "No" he said.
I looked at Annie and said, "Should we talk about the other thing now?" We've never thought to hide his condition from Jake, I was really just checking our combined courage level. Then I said "There is something that is different about Jake's body. It is different from Dad's body, or Mom's or Alli's or Linny's or Brooke's. You have a thing that is called NF. Have you heard mom and dad talk about NF before?"
"NF is just a coupple letters, N – F, that is short for a big word that says what is different about Jake's body."
     "I wish my body didn't have any letters."
"Me too, kid. But I think that the NF does give you headaches sometimes and I wish it didn't."

We talked a little about the preschool program to try to get him excited about going and after some careful prodding, we were off. We got to the program a few minutes late and Jake was still teary-eyed when we got there, but after a few minutes he warmed up and was happy to be there with his friends. He shook the maraccas, and delivered his line and smiled for his pictures. He did great. The kids were all cute and good and funny, just like you want kids to be.

Real quick, can I just say that if you have never had the impulse to clone the people in your neighborhood so that you could fill the world with awesome, caring, friendly, giving people, you should move to my neighborhood. Cause that is what we've got going on over here. Jake loves the kids in his class, and they love him. He gets invited to go over to other kids' houses to play and the moms are always so good to him. These people are amazing and I love them.

After the thing we came home and Jake's head was still hurting. He sat on our bed for a while then he just wanted to go to sleep. He got his jammies on and climbed into his bed. I went in to tuck him in and he said "I wish that my headache did not hurt." I said I wished so too. He held up his hand and made a zero with his thick, beautiful fingers and said "I wish I had this many letters N – F." I managed to keep my poker face but it took a little effort. I sang him his songs and kissed his fuzzy head good-night.


  1. Oh Jim, this broke my heart. I'm glad your experience with his preschool has been so good. We have a little girl at our preschool who has NF and she is ALMOST as cute as Jakey. Hope he's feeling a little better. I love the way you explained NF to him.

  2. Thank your for sharing this sweet story. What an inspiration your family is for the rest of us. We think of you guys and little Jake often. :)

  3. I wish I was as tough as Jake. You aren't the only one trying to keep a poker face. It's amazing how those little ones affect their Dad's.

  4. What a trooper that Jake is! Who really wants to shake a maraccas when you have a headache that bad?! Love that boy.

  5. Jake rocks. I want to be strong like Jake. xoxo

  6. You have an amazing child. I know how hard the poker face can be. You guys are such amazing parents, thank you for sharing Jake's story. We will try our hardest to be at the walk again this year, but as you know sometime life can get in the way and everything with Millie is so up in the air. I hope his headaches have gotten better. We think of your whole family often.