My family’s favorite movie of all time is The Princess Bride. We have watched it so many times I honestly believe I could recite the entire film by heart. For years, anytime we headed out the door to do anything special my father would call after us, “Have fun storming the castle!” I was 14 at the time and desperately in love with Wesley. I don’t think it’s a coincidence that 10 years later I was engaged to a boy who was poor and perfect, with eyes like the sea after a storm. My brothers’ favorite character was Inigo Montoya. For months after the movie was released I was subjected to countless reenactments of the final sword fight between Inigo and Count Rugan.
Brother #1: Hello! I am Inigo Montoya, you killed my father, prepare to die!!!!!!
Brother #2: Stop saying that!
Brother #1: No, offer me money!”
Brother #2: Yes
Brother #1: Power too promise me that!
Brother #2: All that I have and more, please.
Brother #1: Now offer me everything I ask for.”
Me: “Anything you want.”
Brother: “I want my father back you son of a bitch.”
Then brother number #1 would pin Brother number#2 to the floor and fart on him.
The Princess Bride is a beautiful and exciting story, but it’s not the one I’m here to tell.
Once upon a time there was a mother who bore a son she thought was perfect. The doctors told her he was perfect. Until he reached 9 months, there was no clear indication anything was wrong, though the mother had some lurking suspicions. By that time, though he was trying very hard, the son couldn’t figure out how to crawl. Mom called Early Intervention but they wouldn’t come out. “It’s too early. Call again when he’s one and we’ll talk,” they said. By 12 months the son had learned to crawl but he wasn’t even attempting to stand so the mom called again. “Lots of kids walk late,” they replied. “Call again in 3 months.” So 3 months later when the son still couldn’t stand, Early Intervention sent a physical therapist out to assess him and he qualified for therapy. After only two months the little boy was up and walking. He was awful at it, but he was walking. “He’s fixed!” the mother thought happily. But then the physical therapist asked one day, “Does he ever babble? I’ve never heard him make a sound.” The mother was (no pun intended) speechless. “Why no,” she said. “My God I was so fixated on the fact that he couldn’t walk I didn’t even notice he wasn’t trying to talk.” The therapist was an older woman, and very kind. She took the mother’s hands in her own and said, “Don’t worry. I’ll call for a speech consult and I’m sure they’ll have him reciting Shakespeare in no time.”
I think that was the day it all began. There was no diagnosis. I hadn’t brought him to Children’s Hospital yet. No one had even suggested it yet, but they didn’t have to. I knew something was wrong. I’d known for months.
I wish I could lie and tell you I had this great epiphany. I wish I could tell you that the day we got our diagnosis I stood up in front of the doctors like Scarlett O’Hara, fist raised to the sky and said, ”As God as my witness they’re not going to lick me. I’m going to live through this and when it’s all over he will be fixed. If I have to lie, cheat, steal or kill, God as my witness he will be fixed.” This did not happen, not exactly. I don’t remember a word the doctors said after they told us Kevin was developmentally disabled because I stopped listening. “I can fix this,” I thought. “They’re going to tell me this can’t be fixed but I don’t have to listen. I will fix it no matter what it costs me.”
That night after Kevin had fallen asleep I laid down beside him and decided my life was over, but not in a bad way. I was going to live a new life with a mission, and nothing was going to stop me from completing it. Kevin was going to walk and talk, go to public school, have friends, play sports, and do everything “normal” children do. Maybe a little differently or not as well, but he was going to do it. I would stop at nothing.
Walking was the easiest thing to fix. After 2 years of leg braces and five years of physical therapy Kevin was walking as well as any neurotypical, extremely clumsy child. His gross motor skills were poor and his fine motor skills non-existent so we hired an occupational therapist. Three years later, the only thing he couldn’t do was tie shoes. Next on the checklist was speech. At two years old Kevin drooled incessantly and could only make a handful of sounds. 13 years and thousands of dollars later the drooling has stopped, his speech impediment has improved dramatically, and Kevin speaks in full sentences. He refused to use the toilet. I found a BCBA who specialized in potty training. I will spare you the details of those therapy sessions, but by four years old Kevin was pooping on the potty and urinating all over my bathroom like any other boy. He couldn’t ride a bike. I hired a personal trainer. He avoided his neurotypical peers like the plague. I paid for social skills classes. He now has a harem. They fawn over him and pour caramel on his salad. I should really talk to them about that.
Over the years one problem remained: aggression. We fixed it at school. Thanks to an amazing psychologist, doctor, behaviorist, and teacher all working collaboratively, Kevin’s behavior at school improved dramatically over the course of a single year and the aggressive outbursts decreased every year after that. The last incident occurred 5 years ago. He hit his aide with a wiffle ball bat because she told him gym was over. He was given detention like any other child and they’ve never had a problem at school since.
Home was a different story. You’ve read the blog and heard the story: Kevin has been hurting me for years. Sometimes he hurt me by urinating on the cereal I wouldn’t buy, or pulling my hair as I drove because I refused to stop at Chick-fil-A, or kicking me in the shins because we ran out of milk. He hurt me over and over again in a million different ways for a million different reasons and no matter how consistent we were or how many therapists we hired, the problem persisted. Then came puberty.
Puberty is hard for any parent, but it can be torturous for us club members. I was warned countless times by countless people, but nothing could have prepared me for what we went through when Kevin hit puberty. It was bad. Bone crushing bad. Calling the police kinda bad. Whole bottles of vodka kinda bad. But when it was over, something was different.
He matured. Things I never dared to hope for started to happen. You remember how murderous the showering used to be right? Nowadays Kevin showers every other day at exactly 7:30 without any sort of fight. By the time he’s done my bathroom looks like a pipe burst but he’s clean. He’s been wearing a diaper at night his whole life but about a month ago he started getting up at night to pee and the diapers are gone. Chris and I overslept one day last week. We tore downstairs 5 minutes before the bus was due to arrive and found Kevin sitting on the couch completely dressed, teeth brushed, backpack packed, eating the breakfast he’d made himself. We didn’t know whether to shit or go blind. Most importantly, Kevin doesn’t hit me anymore. After 15 years and countless violent tantrums, Kevin has learned to tolerate being told no. He can be reasoned with. When he loses his temper he apologizes and asks if we can start over. He still has nasty tantrums but the boy who has been hitting me, biting me, and pulling my hair for 12 years hasn’t laid a hand on me in 10 months.
One problem remained: bedtime. For all his life, at 8:30 on the dot, Kevin would come find us and no matter what we were doing, he would demand we stop doing it and put him to bed. About a month ago Chris decided he’d had enough. He told Kevin, “You are 15 years old and that is old enough to put yourself to bed. We don’t tuck your sisters in at night. By the end of the week you will do this by yourself.” Kevin did not take this news well but every night that week while tucking him in Chris would say something like, “Ok buddy it’s Tuesday. Sunday you will tuck yourself in, remember?” and Kevin would say, “I member.” All the while I’m thinking, “There is no possible way Kevin can tuck himself in! This is going to be a disaster.”
On Sunday night at 8:30 Kevin came out to the living room, kissed us both, said, “Night night Mommy and Daddy,” and put himself to bed. I could not believe it. Another victory. At 10:00 I decided to check on him because I assumed the blankets were a mess and I didn’t want him to wake up freezing. When I opened the door he was sound asleep and the blankets were perfectly straight. He had done it all by himself, and my heart snapped in half.
I did it, I thought. This was the last thing. This was the very last thing he couldn’t do and now he’s done it so I should be happy but instead I feel sick. I want to wake him up and say, “You can’t put yourself to bed Kevin because you’re a helpless little boy and you need me. I have to let the girls go but you were supposed to need me forever. All that stuff I said about you growing up and having everything other boys do: I didn’t mean it. You’re my baby and I never wanted you to be anything else. After everything I’ve been through don’t I deserve you to stay my baby forever?”
I started to cry and that woke him up. “Mom you OK? You crynin?” Then I laughed. The way he says crynin instead of crying is still so adorable after all these years. “I’m OK buddy but I am a little sad. May I lie down with you for a few minutes?” “Ok,” he said. “But only for foo minutes btause I has school tomorrow.” I laid down and held him as I had the night we got our diagnosis, and just as I closed my eyes I remembered a scene from The Princess Bride.
After 20 years of searching, Inigo Montoya finally finds the six-fingered man, kills him, and gets his revenge. He should be overjoyed right? He’s been waiting for this moment the whole movie! But as he sits atop a windowsill with Wesley gesturing for him to make that final jump to freedom, Inigo looks painfully lost and heartbroken. He tells his friend, “You know, it’s very strange. I have been in the revenge business for so long. Now that it’s over, I don’t know what to do with the rest of my life.”
Suddenly it all made sense. I wasn’t a horrible, selfish person for being sad and scared. I was just a mother who had devoted her entire existence to a disabled child who, thanks to all her hard work, wasn’t all that disabled anymore. Mission complete. Now what?
I guess I start with an admission: Now that it’s over, I don’t know what to do with the rest of my life and it terrifies me. But maybe it doesn’t have to? I’m not sure what I want to do but Dear God look what I did! I don’t really know who I am but I understand what I’ve accomplished and I think that’s a good place to start figuring it out. I gave up all my dreams and lost all sense of who I was because I thought he was the only person that mattered. I couldn’t have been more wrong. The movie may be over but the story doesn’t have to end. I just have to follow my sweet Wesley’s example and jump. And when I’m safely on the ground who knows? Perhaps I’ll try my hand at piracy. I bet I’d make a wonderful Dread Pirate Roberts.
