I think all good parents worry that one of their children is being shortchanged in some way, but this fear increases exponentially when you have a special needs child. Some days it feels as though everything is about Kevin, keeping him calm, keeping him happy, or keeping him from harming himself and us. There’s not a day, not a single moment, that I don’t worry my girls are being cheated.
We just returned from Universal Studios in Orlando Florida and what an amazing place, ESPECIALLY for families with disabled children. We were able to bypass all the lines and not only did the staff allow Kevin to choose his seat on every ride, they weathered each of his outbursts as if it was nothing out of the ordinary.
I planned this trip over a year ago for Dana. It was all for her. Dana is a bonafide Harry Potter junky and I couldn’t be more proud of my self-proclaimed “nerd”. She has sorted each of us into our prospective “houses.” Chris, Papa, Kevin and I are Hufflepuffs, Godmommy and Dana are Ravenclaws, and Kayla and Grammy are Gryffindors. I know it won’t last. Puberty is just around the corner and before I blink I know the robe, wand, Ravenclaw T-shirts, and Marauder’s Map will be replaced with lipstick, Teen Vogue, and God knows what else. They told me years ago to hang on to every precious moment but like many parents I didn’t listen until 2 years ago when I finally saw her childhood slipping through my fingers.
2 years ago (she was 10) I thought Dana still believed in Santa Claus. I figured it would be the last year so I planned a vacation to Disney World on Christmas Day. When the kids woke up the only things under the tree were suitcases and an agenda written by Santa to Dana detailing every moment of the trip. It was all for her, this last Christmas I thought she believed. We had a great time, but when we got home Dana sat me down and said, “Mommy, I know it was you. I wanted to believe but deep down, I knew it was you. Thank you.” It was one of those moments when you can actually hear your heart break. She knew I did it all for her, she knew I loved her, but my baby didn’t believe in magic anymore and I was cognizant of every moment I’d lost, because I was so busy with Kevin.
This time I wanted things to be different. “OK,” I thought. “She doesn’t believe in Santa but she still believes in wizards and witches so the magic isn’t gone!” I let her plan everything down to the last detail and spent WAY more money than I should have but it would all be worth because for ONCE, everything would be about Dana and what she wanted. For ONCE, my darling girl wouldn’t be in second or third place.
We got home yesterday and all in all it was a great trip but it was also hard. Everything with Kevin is hard. There were meltdowns in the park where he hit us, screamed at us, bit us, and pulled our hair. There was a tantrum in a restaurant that silenced the whole place: where it seemed a thousand eyes were bearing down on us with either pity or disdain. There was the day he didn’t make it to the toilet in time and pooped all over the bathroom floor and Dana had to bar the entrance to the men’s room while I cleaned the mess and Chris found new clothes. It was a successful trip, but there were moments that nearly crushed me.
I’ve taught my daughters to be honest about what our life is like, but sometimes the truth hurts. For example, our first day in was rough. Kevin was confused, overstimulated, and extremely agitated. After dinner, he finished his desert and then demanded Kayla give him hers. When she refused he started screaming and hitting her. Dana’s godmother, who isn’t used to seeing him melt down like that, politely suggested we bring him outside and Dana responded with, “Oh YOU’RE embarrassed? Seriously?! Welcome to my life I deal with this every day.” Ouch. I never heard her say anything like that before. She was embarrassed and angry but it was the cold, hard truth and I understood exactly how she felt.
Our last day we spent swimming in the pool. Chris and I were holding Dana when Kayla swam over to us (Kevin was with Grammy). We each put a girl on our back and Kayla said, half-jokingly, “It’s like we’re a perfect family!” Translation: We’d BE a perfect family if only we didn’t have Kevin.
And then there was the day I caught Dana’s Godmother and my mother talking about me. “I heard you two!” I said. “What are you saying behind my back?” I asked jokingly. But my mother put her head down, as if making a confession and said, “I was just saying how sometimes, when Kevin explodes like this, I just have to walk away it’s so hurtful to watch. I hurt for you and for him and I just have to get away.” Ouch, ouch, double ouch.
And as wonderful as the late night talks with Dana’s Godmother were, one night she confessed to me, “You have a very hard life I wouldn’t want it for myself.”
I must have asked Dana a million times in four days, “Is it everything you dreamed it would be?” And every time she replied with something along the lines of, “It is Mommy it really is and if Kevin wasn’t here it would be perfect.” I can remember thinking, “You know Dana all the honesty I’ve heard this week didn’t hurt quite enough how about we get some lemon juice or salt or something.”
So begs the question, “Rachel have you done the right thing encouraging the girls (and everyone else you love) to be honest about their feelings? Shouldn’t you be responding to all these comments with something along the lines of……..Don’t say that about Kevin!” Maybe.
I’m sure there are those who would say I’ve made a mistake allowing my girls to speak so freely about their feelings and thoughts but you know what? They don’t have to live the way we do. We’ve had to survive things most people can’t imagine. I’m probably not raising my girls the way most people do but they are living a life most people can’t possibly imagine so yes, we live by our own set of rules over here, and part of that is admitting you’d rather not get slapped in the face in line for The Hulk because Kevin wants to go first or telling strangers they can’t go into the bathroom right now because Mommy is busy cleaning poop off the floor.
My girls speak some harsh truths, truths heavy with anger and resentment but we’ve all learned something the hard way: when you speak those truths it sets you free to love when it seems impossible. I can’t count how many times (after she said she hated him) the following conversation took place in one of the parks.
Kevin to Dana: I hit you!
Dana: with all the empathy and patience in the world, “Please don’t hurt me?”
Kevin: I want to!
Dana: “OK Kevin if it will make you feel better you can hit me.”
Kevin: Sawney
Dana: It’s OK, thank you for making the right choice. Let’s go on another ride, you can go first!
And Kayla, who said we’d be the perfect family if only it weren’t for Kevin, took more physical abuse than any of us, and returned every blow with a firm hug while softly whispering, “It’s OK buddy I’m here, I’m right here,” as she held him. What is it she always says? Oh yes, “Bad thoughts and feelings are like weeds Mommy. You can’t pretend they’re not there. Pull them out by the root and let them die or they’ll kill everything you’ve worked so hard to make beautiful.”
So we’re home now. Kevin has been so peaceful and pleasant all day, so obviously relieved to be where things are familiar. I ask Dana to sit in my lap and she agrees, which is rare. She’s almost 13 now and sitting in Mom’s lap is sooooooooooooooooo not cool!
Me: Why did we go to Universal?
Dana: Because you love me and I love Harry Potter.
Me: What was your favorite part?
Dana: Getting my Godmother all to myself in Hogsmeade and Diagon Alley.
Me: Was it just like you dreamed?
Dana: Better.
Me: Do you still wish Kevin hadn’t come?
Dana: No, I was just mad. Sometimes you have to let yourself be mad or you’ll never be happy right?
Me: Right. I’m sorry he takes up so much of my attention.
Dana: It’s OK. He takes up a lot of everyone’s attention, even mine.
Me: I love you.
Dana: I love you more
Me: Not possible
And so we’re home. Dana is in her Ravenclaw robe, wand in hand, re-reading The Order of The Phoenix while munching on a chocolate frog. Her friend just texted to ask how the vacation went and she replies, “The best time I’ve ever had in my whole life.”
Mischief Managed.
